Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!
Saturday, April 28, 2012
Take Me Out to the Ballgame
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
Thank you to the Sugar Land Skeeters coaches, players, and staff for letting me throw out the first pitch at your game last night and in honor of SMA awareness! Everyone was so kind to me and my mommy & daddy and I'm not sure if I had anything to do with it, but we won the game 10-1.
Not the best quality video, but notice the catcher doesn't move his mitten.
A couple of my SMAns (SMA + Fans = SMAns)
Every pitcher naps before the big game. Right?
Daddy is making me say the mascot was a real
pest and he kept bugging us...ugh he's sooooo cheesy
and such a dork.
A lil pre-game back rub never hurt.
One at a time boys. One at a time!
Coach Gary Gaetti - mommy had no clue, but daddy seemed
to know who he was. All I know is he was super nice!
Daddy I'm not a puppet, I'm a pitcher.
Waaaaaaaaa...I want to throw my curveball!
Mommy & daddy escorting me down the mound towards home plate.
Stttttttttttttttttttttttrike!
Why on Earth anyone wants to put a mask on this guy is beyond me.
Daddy, please face me the other direction. Hubba Hubba!
I'm on top of the world! Well perhaps just daddy's shoulder again!
Items I Can Scratch Off My Bucket List:
1. Go to my first baseball game 2. Throw out the first pitch at a baseball game 3. Throw a strike...whatever that means. 4. Have thousands of people cheer for me at once 5. Shake hands with super hot baseball players. 6. Meet some of my SMAns.
Up Next: Whatever I bring to life, because I don't have time to wait for life to bring anything to me.
Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!
If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:
I LOVE IT!! now if only you could visit the BIG APPLE!!! (A.K.A NEW YORK) how awesome would that be. I'm a huge Philly fan myself but you have to be a tourist the there is no better place to go than NY usually. They copied our "Love" park and I think a picture in front of that would be so adorable! xoxoxoxox
Found your blog via Facebook. As a pediatric intensive care nurse at a large pediatric hospital I am unfortunately all too familiar with SMA. I am so glad you are choosing to make the most of every moment you have with your family. For such a young age you've done more than my girls who are 3 & 5! Keep it up!
Dear sweet Avery, I just started following your story yesterday and read every blog entry by night's end, and I must say you and your wonderful parents and grandparents are some of the strongest, most inspirational, and funny people ever! Your smile is infectious and beautiful! I, like many others, had never heard of SMA. I have 3 children (my youngest is a 10 month old named, Trenten, he is single by the way...I hear you like older men ;) and not once during any of my check ups did any of my ob/gyns ever mention SMA. I have already shared your story on my facebook page and will continue to share your story! Enjoy every moment checking off your bucket list and may God bless you and your amazing family! With Love, Sabrina Silva from central California
I am so sorry for what you are having to face, but am so inspired by how you are facing it! Avery is a beautiful and precious gift to us all. Thank you for sharing your/her story with the world. My sister-in-law had a baby with SMA. I know it is devastating. If it encourages you at all to know, she and her husband went on to have two more babies...without SMA. Praying for you both and Avery! What a full life she is living!
Nice pitch, Avery! You need to meet STEVE Avery, a former baseball pitcher for the Atlanta Braves! (That's who my 6-month-old Avery is named after...her daddy is a BIG baseball fan.)
Avery...The face on the SMA postal stamp! How's that sound. If mom and daddy will make some stamps with your picture I'll buy some. (of course mommy and daddy will add a fee to the cost as a donation in your name.
http://photo.stamps.com/Store/?sslr=true
Please, please make Avery our very own SMA stamp girl. I also posted on your FB about submitting it to the US postal service as an official stamp! How awesomw would that be?!
I am a pediatrician who helps to take care of many children with SMA at the University of Wisconsin Madison (American Family Children's Hospital). I am privileged to have the opportunity to work with Dr. Mary Schroth who is world-renowned in her care of children with SMA. We have families come from near and far to have their children cared for by Dr. Schroth. I just wanted to pass this along as I learned about Avery through the Momastery blog and thought it may be helpful for you all to know that there is a lot that can be done for children with SMA Type I. We'd love to see you in Madison if it would be helpful :). God bless Avery and your family!
GO TO MADISON!!! Keep searching while you do the wonderful job of raising awareness. ...Support the tiny Mitochondria inside the cells that make up muscle mass w/ the cleanest purest, most natural forms of Oxygen, Water and Protein available. There must be some optimal formula. (If studies show how violence changes the DNA in children and shortens their lifespan, can't the reverse also true... extension of a lifespan based on factors other than genetics?) Consider other elements, (iodine, selenium and magnesium?) that your body needs to process oxygen, air and protein, and to rid the body of toxins. What is blocking the support of the muscle mass, what causes it to atrophy? ...Certainly, I am no docter! However, I have honestly met a few people diagnosed by doctors as terminal, after they have lived far beyond their life expectancy through a change in diet called "Macrobiotics," which they tried when there was no other hope. I pray that you keep searching and sharing your story. Thank you.
I just wanted to let you that i think you are an amazing little girl. I recently told my church about your story and we are all praying for you! Just remember that you are fearfully and wonderfully made in the image of God and He does not make mistakes! I fully believe in the power of prayer and I am praying for a long and happy life for you.
I just read the story about Avery on CNN and wanted to share that years ago, I was working at a school where a little girl with SMA was attending. She was in kindergarten. I am pretty sure she had SMA type 1 (could have been type 2, but I don't think so) because it was considered very miraculous that she had reached the age of 6. I don't want to be misleading-- she used a wheelchair and had a personal nurse to assist with her respirator-- but cognitively, she kept up with the other kindergarteners. I moved after her kindergarten year so I do not know how things progressed, but I did want to share with you, in hopes that it might serve as a bit of encouragement. Wishing you many years with Avery so that she can accomplish her bucket list...and so that scientists can have time to find a cure.
You are an inspiration to us all!! Just one thing, would you please post and tell my friend that is an airbrush tattoo? She is very upset that someone would give a baby a real tattoo! I told her it's not real but she doesn't believe me.... I'm going to tell everyone I know about you, and your cause. I have four kids and did not know about sma.
I agree, say that it's an Airbrush tattoo, if it really is. I'm personally very dense about these things. I wouldn't mind if you say I lived in the boondocks or something for not getting it (I really didn't get it.) My parents were not as cool as Avery's and so my knowledge of tats (other than the fact that it's painful to get one even though it's "cool") is close to nil.
Good luck and God bless your family! I will be praying for you. You give "live life to the fullest" a new meaning. Stay strong! You can do it!
Thank you Avery for being so brave and sharing your story. I have a baby girl, Madelyn who is just a few months older than you. When she wakes up I am going to tell her all about you and when we say our prayers at night they will include you from now on. You are such a beautiful girl!
WOW Avery! I found you yesterday and have just fallen in love with you! I read all your posts yesterday and am just completely amazed at your life so far. You have done some really cool things!
I sure am looking forward to you checking more items off your bucket list. You have completely inspired me!
Hi, Avery! I LOVE your blog and am really enjoying all the wonderful stories of all the fun you are having. Gees, all those cute baseball players giving you "the eye"--wow! ;)
I am a blogger and have been so for 4 years now, may I make a suggestion? Please put a link in your sidebar to we can all read about SMA--the cause, the symptoms, the contacts for those who want to learn more, etc. I think that would be really helpful in your quest for getting more people to know about SMA.
Also, please add a "Follower" link so all of us friends can join your site and follow you on your adventures. I think your site will soon spread like wildfire in the blogging community and help your cause even more!
I wish you the very best of life, Avery! It's a good green earth with so much to see and enjoy. Don't forget to enjoy the little stuff too, like caterpillars, bullfrogs, and orange stripey kitties.
Is ti a real tattoo? Also, have you gotten your ears pierced? A girl should always rebel just a little get get something pierced. I did at your age. Of course mommy helped, me, but I'm sure it counted all the same. Also, if yo want to color your hair weird colors:
The oil free pastel chalks color wet hair safely, looks like dye and washes out on the first shampoo. If you want something more permanent, try koolaid, but it always smells fruity and it takes forever to stain the hair. Also, you should got to a Ren Fair and a convention.
this may help in your teenage rebellion: http://www.bikerbabyclothes.com/catalog/
I followed a link to your blog through yahoo news. I thought I'd pass on a link to another family that blogs and has a daughter (Lucy) with SMA. Lucy is 3 and is the grand daughter of a lady I know here in Illinois. You can find their blog at: http://chadncherissefamily.blogspot.com/ if you're interested in connecting with another family affected by SMA. Lynne in Illinois
This page is adorable ! i think all parents should do this for thier kids i love blogs..Ima remeber your daughter in my prayers never lose hope and the life of your duaughter and her time to go is not in the hands or knoweldge of the doctors how many times have they come out only to be wrong noone nknows when thier time is up.
My daughter has SMA as well and I have meet many others with different types of SMA. Most type I's do live past 2 now because of all the research that has been done. Also, there is a real chance of a cure in her lifetime. SMA has been voted the disease closest to a cure. I think the bucket list is great, I really, really do. I know several type I's that are far beyond the age of 2. There is a lot that can be done. Dr. Schroth is amazing and so is Dr. Swaboda in SLC, UT. It is DEFIANTLY worth a visit and hope. Praying for a cure in 2012!
I just ran into your blog while looking up activities for my youth group. It touched me to read how strong you two have stood through this trial. God gives us only what we can handle and only what he knows can be used for the better. What you three are doing is an amazing thing. I myself was born with a rare birth defect called mallux disease and it caused pain my entire childhood and finally attacked completely when I turned 17. I spent 4 or 5 weeks in St Joseph hospital in tampa fl losing 4 pints of blood a day while they franticlly searched for an answer. I'm 26 yrs old now and I teach youth with my wife about gods love for us and how he moves on every situation we go through. Have faith and continue the great works.. we are all praying for you guys at our church. Ill be sure to add you on FB and spread the word
Hi Avery, I just wanted to send you hugs & kisses from New Jersey. Your mommy and daddy are so lucky to have you. Next time you talk about your bucket list, tell them you want to have a half birthday party, it will be good practice for your first birthday. You can have everything you want at a half birthday party just the same as a first birthday party. As you know your half birthday is 05/12/12 which is coming up soon. So I want to be the first to say Happy Half Birthday Avery! Love, Jennifer
Your story made me cry so much. I wrote you on Facebook and Twitter, and am sending you something on Monday. I hope you like it and find comfort in it as much as I have found in them when I was a baby and toddler.
Your humor is inspiring. My wife and I found out we carry a recessive gene that also has a 25% chance for our children to have WNT3A or tetra Amelia syndrome. Unlike SMA, our genetic syndrome has only a few recorded cases but it didn't make it any easier to hear that our son was "not compatible for life". All we heard was that we had better chances of being struck by lightening and they were amazed that we found each other and that he made it to 20 weeks in the womb. I have never talked about it in a public forum but it's inspiring to see how you've focused on Avery's life in such a great way. My wife and I are blessed to have our daughter who is 3 years old and absolutely brilliant and also to have "known" and loved our son ,baby James.
Hi Avery, My daughter Amilee was curious if you were still up for tasting a few sweet treats? She said if you can you have to try one of mommies homemade chocolate chip cookies, that is if you haven't had one already. She eats one almost every day and thinks that everyone else should too.
Sweet Precious Avery, You have such a beautiful smile! Your pictures make my heart melt, and bring a flood of tears to my eyes. God blessed you with amazing parents! I did not know about SMA until reading your story. I gave birth to my son on March 2nd. He was 6 weeks early, spent 3 weeks in the nicu. SMA testing was never discussed with me. Thank you for sharing your story. You will be in my prayers.
A few more suggestions baby avery for your list, get a hair cut curl your hair get into your moms purse when she's not looking and try on her lipstick/ makeup take money from your dads wallet when he's not looking go to the movies ride in a convertible ride a elephant ride a camel ride a horse go on a plane go on a train ride on a boat ride on a jet ski/sea do take a swim lesson go fishing with dad enter a beauty patent design a mom and daughter matching outfit plant a garden using tulip bulbs and others help water the garden....
Hi guys, I'm a photographer in New Orleans and am just now discovering Miss Avery and her awesomeness. I'd love to come do a family shoot for you as a gift if you don't already have a photographer you love. Feel free to google me and find my site, I don't want to link it here cause that's tacky. Bravo on making the best of an insanely difficult situation, I can see why God chose you for Avery's parents. Bon courage, Olivia Grey Pritchard
Hi Avery, My name is Isabela, I'm 13 months. I live in Tennessee with my mommy an daddy. I got two older sister Nikki 23 (named after some rock star named Nikki Six never heard of him have you?) and Michelle she is 20, even though they don't live close to me I love them and miss them always. I will visit them in Oklahoma next week, Nikki has her graduation as well as Michelle finish her school too, I will tell them about my new friend Avery. My daddy saw your story in yahoo at work ( don't say nothing to his boss secret) and he told me about I, we have been following your adventures ever since. We are sad but at the same time happy and exited with all that you have done and how everyone is spreading the word on SMA. Now that I have either a baby brother or sister on the way I am reminding my mommy and daddy to ask to get the test done thanks to you.
I when to the mall to see if I could get you the best next thin to a real tattoo but I could not find one but then I saw you already got one, you go girlfriend. I see you got to hang around the baseball players hmmm they are really cute. Me, I love sports too, I was born a Tennessee Titans fan ( yeah baby, don't make fun of them they are good), baseball in AL Mariners all the way ( I think Ishiro is a hotty) and NL LA Dodgers ( Oh can stand the Yankees).
Other sudgestions for the list; Start a comic book collection Go to Comic Con dress up as a super hero ( I go as Harley Quein) Go see the WWE live This is a must you need to see all the Star Wars movies
My daddy mention to join the Army and get you Air Assault Wings and ride in a military car and maybe get on a helicopter. If you want to do this one my daddy said if you ever in the Fort Campbell and want to do this let him know in advance so he can talk to people and make it happen.
OK girlfrien its been past my bed time, take care, I love you. Your friend Isabela
I saw visiting Niagara Falls in on your list. Do it, it will change your life. I spend years living within walking distance of the park and went down several times a week just to stare at the rainbows.
I came across your blog through Yahoo! and I just want to say that you Avery, are a true inspiration. You are so blessed to have such wonderful parents!! To be honest, I'm not sure who is more blessed....you or your mommy and daddy! I have children myself and the doctor told me last week that I could not have any more and that has made me really sad. I should actually be happy to have MY children!!! Thank you for being such a brave little girl!!!
Avery, you are the sweetest. Your story is so moving and amazing. I've wrote an article about you on an Italian web magazine for which I write, that's all I can do right now but it's a way to share your story also in my country
Stay strong - I wish you and your great parents all the best
I KNOW we will see you on Ellen soon. You'll melt her heart with your smile as you do your thousands (soon to be million?) followers. Hang in and be strong. Let your parents know that I was offered the SMA test when I was pregnant last year, but I didn't know what it was, so I didn't bother with it, so some doctors do proactively offer it (we're in Austin). My six month old daughter and I donated $250 toward SMA research in honor of you to MDA. We'll continue to follow you and look forward to years of your bucket list! Reading these comments and seeing the page views skyrocket, I know you've touched many lives and will continue to touch so many more. Have a great day!
OOOH! Your pink shoes are SO cute! Awesome pitch, my son pitched yesterday in his little league game and you both did great! I think the Skeeters won because you're their little good luck charm, that's why they all wanted to touch you for luck! Keep up the good work girl!!! xoxo your GA fans
Wow! Avery you are a beautiful baby with a beautiful family. I too have a daughter with special needs, although. I understand that it is much different than having a terminal disease. I've spotlighted many kids with special needs on my blog--including kids with SMA. I too hope for a bright future and a good outcome for you. I do know that all life is precious. And you are living yours to the fullest! Good luck and much love.
Hi, my name is Telisa. I myself was diagnosed with SMA shortly after I was born. My mom and dad were told when we found out that I wouldn't live past my second birthday either. Guess what... I proved EVERY doctor wrong and am still proving them wrong. It takes the support of a strong family and strong will to survive but I am now 29 years old and just crossed the final battle that every doctor told me I wouldn't be able to do and that is have a child of my own. Yes, my husband was screened to see if he was a carrier and luckily he wasn't. I hope and pray that you get to achieve every thing you put on your bucket list and more through a very long life. Stay strong and fight.
Hello little friend! My family has been touched by muscular dystrophy - I have limb-girdle and my father has FHS. Throughout our experience, we have learned two things: patients can and do exceed doctors' predictions of survival rates, mobility, etc., all the time, and there seems to be little correlation between the state of the body and the happiness of the heart. At your young age I think you understand the latter very well already! Keep on shining, little star; there are so many people who love you!
I will pray for Avery and for you,as well.God can do ANYTHING,and if He chooses,will heal Avery completely.Either way,you will see her one day HEALTHY AND HAPPY! God keep you and bless you! Judy gosplgirlsreflections.blogspot.com
Hey Avery, I heard about you via Facebook. Your story,strength and attitude have really inspired me. This is the first I am hearing about SMA. I am praying for you, your family and the doctors. God works miracles. Enjoy your journey and thank you for sharing your story with us. I don't have kids yet, when I do I will tell them about your story. Jackie Dallas Tx
Avery your parents are awesome to allow you to live life!! I have been researching SMA for the past month because my daughter who is 17 months old has lost use of her legs and is starting to lose strength in her hands. I have wondered several day when we will get that phone call about our daughter having SMA. I am hoping/praying that it isn't what she has but I am making myself fully aware of what SMA is and trying to help spread the word about it. It is something that everyone should know about!!!! I hope you have a great adventure today and the days that follow. I will continue to keep up with you and hopefully my daughter can live as full of a life as you have had already!!
Just found this blog.. Hopefully your blog can help for SMA research.. I just wrote about this in my blog.. http://yourhealthblog.net/categories/avery-blog-by-a-baby-sticken-with-spinal-muscular-atrophy/
I just learned about you and your family through the article on cnn.com. Have you heard of Gwendolyn Strong (or her foundation)? Her family has compiled a huge amount of information about living with SMA. If not, check it out: http://thegsf.org/
Came across your story from CNN. As a father and husband myself, I want to say thank you for the inspiration and for letting the world know how wonderful life is and that every second of it counts. I wish you all the best in everything. God bless you guys!
If you haven't already you might consider contacting J. Robbins and his wife Janet. Their little boy Cal was born with SMA and got the same initial diagnosis. That was six years ago, and Cal and family are currently in England celebrating his Granny's birthday. You can read their blog at callumrobbins.blogspot.com. I wish you all the best.
Hola, vivo en Santa Marta, Colombia, y estoy muy conmovida con la historia de Avery. Espero que Dios ponga sus manos sobre ella y le permita vivir mucho años. Una de las cosas que podría hacer Avery es jugar con la arena de la playa, es muy relajante y estimulante para un bebe y para ella sería genial. Un abrazo. ---- Hello, I live in Santa Marta, Colombia, and I am very moved by the story of Avery. I hope God puts his hands on her and can live many years. One of the things that could make Avery is playing with the sand of the beach is very relaxing and stimulating for a baby and it would be great. A hug.
After I get over the sadness of the reason for this blog, I can only say one thing....BEAUTIFUL! You, as Avery's parents are such an inspiration. God Bless you all, and be strong little one. You have inspired many, many, many people!!!
(And if you would like to add anything to your evergrowing list from Scranton PA, just let me know. (Just to fill the gap....Scranton is known as the 'Electric City', as it was the home of the first Electric street car in the US. Home of Steamtown USA, countries largest collection of railway steam engines. And home to Triple AAA baseball for the NY Yankees.)
Hi My name is Lauren. I also was born with sma. i know the struggles r hard. But keep ur heads up. What u both are doing for ur daughter is an Amazing thing. She is beautiful and a pure blessing!!!
I haven't read more than this one post, but I'm anxious to read about your faith in God. I think it must be there. Thank you for taking the time to share this information, and for bringing us along for the ride, full of humor, love and at the same time, sadness. ~Mindy
Hello Avery and parents, I have a son with an undiagnosed medical condition that seems very similar to that of Avery's. I had looked into SMA in the past but for some reason it didn't seem to fit our son Logan. I saw Avery's blog on facebook and looked at the SMA site again and saw so many similiarities. We have tested him for metabolic and mitochondrial disorders and are going to see a genetics phsyician in a couple of weeks. I plan to bring up SMA to them at that time. Logan is 18 months old, has a GJ tube, unable to swallow properly, has reflux and many GI issues. He has a movement disorder of his arms and legs and has poor tone. I saw the before and after photos of her bedroom and smiled remembering our before and after too. Thank you for your blog and getting the word out. This is what parents need when they are searching for answers and you are doing so much for SMA and your beautiful daughter. Best Regards, Rachel Z
Go Avery great job. I am trully inspired and encouraged by your story. I am praying for you, your family and doctors. God works miracles and I believe He is working on your behalf. I am rooting for you.
Hi Avery! I found your link through cnn, and wanted to reach out to you and your awesome family. I am a pediatrics resident at a big children's hospital, and I fortunately know another very special little girl with SMA1. She's had a rough go in her very short life, and through the use of technology, she is now 2 years old, but is completely dependent on her tracheostomy and her home ventilator. She loves having her nails painted, HAS to have her lip gloss or chapstick on, loves blowing kisses, giving belly laughs and smiles. She, as I'm sure Avery is as well, is a VERY smart little girl who's unfortuantely had a very cruddy hand dealt to her. I encourage you and your family to continue what you're doing, take LOTS and LOTS of pictures and live every day to it's fullest! Keep reading to her, talking to her, and talking to her like she's any other little baby, because although her motor milestones will never be what they're supposed to be, I believe that cognitively, as long as we encourage it, she's still very much in there! I was shocked to hear my SMA friend utter bye and gave a little wave when I saw her int he clinic recently (it was a pretty neat trick she learned to say even with her trach!) Avery's life may or may not end up being shorter than we expect it or want it to be, but it's still her life, and she can, and should, live it to its fullest! I love what you're doing, and especially spreading the word about SMA. It's not all that common, fortunately, but when it hits, it's devastating. Avery, ask your parents for lots of big big hugs, and they can ask for one from you too! God bless, and keep kicking butt in reaching your bucket list, and having lots of smiles and laughs along the way! (shitake mushrooms... too funny!)
You are a beautiful little girl and you have such strong parents!! May God bless your family at this time. I've been bawling my eyes out reading this blog. I cannot even imagine and I admire everyone's strength. You are adorable and thank you for spreading the word.
Hi there Canahuati family! We are the members of an endurance mountain bike race team called Bike Logan/Cure SMA. We actually leave in two days (May 1) for a one year adventure where we will dedicate ourselves to raising awareness about SMA. If you'd like to check out our website, you can find us at www.bikelogan.com. Maybe our paths will cross on our travels...
Bucketlist add: have Daddy win you a stuffed animal at an amusement park. I am praying for you and your amazing mom and dad. And sharing your story. Thank you for the reminder of how precious life is.
We love you Avery! Continue to be strong and living life to the fullest. You have taught us all a lesson! When my mommy goes to her 6 week check up next week, she is going to tell her ob/gyn about you and sma!
I was just reading the news via an app on my phone when I came across your story. With my three month old in my arm, I decided to look at your blog. I was sadden by what I read, and could not hold back tears for the adult you should be ab le to become, for your parents and family who hearts I know are heavy. I was upset that I had never heard of SMA, and never had the chance to get tested for it when I was getting tested for possible dieases and things with my little one. I loved to see how brave your parents are, and how beautiful you arefr just like your mother. I love that your dad shares your story and pics of your adventures on conquering your bucket list. I send you all my thoughts, prayers, and love. I will think of you each day I pick up my little one. I will visit your site daily to follow your story.
Best wishes and happy early mothers day to your mom. Erica from michigan
Dear Avery , you are in my heart and in my prayers .A big kiss to you sweet baby , and to your fantatic parents . A big hug from Italy Marika Costantino
God bless you and your family. What an inspiration you are. You could've just kept little Avery a secret and never shared your struggles with the world, but instead you've chosen to share your story with us in a remarkable way. You're inspiring others with SMA, and even people like me who doesn't have the disease but is still moved by little Avery's life. Thank you. Avery's a blessed little girl and I know that she will be watching you from heaven one day and saying special prayers for mommy and daddy. Your love and work will not go in vain. ~Jeremiah 29:11
Avery and family, I am a principal at a middle school in Bisbee, Arizona. We are a small school district where our leadership team works very closely together. I can help with one of your bucket list items. We are holding Promotion Ceremonies for our middle school and Graduation for our high school next month. We will pay for costs and make gladly give you an honorary certificate and diploma. My demographic are students who come from struggling families, they truly need your inspiration and your help as much as you need this bucket list item. I know the offers are pouring in, but if we can help mark this off and get you across our stage....we are more than in....contact me at mfranco@busd.k12.az.us. May is the month to do this bucket list item!!! You are a beautiful, amazing story...I am so touched and want to help....
What a fun day, Avery! You are a beauyiful baby girl. My son, Nicholas, will turn 4 next month and he also has SMA. We will be reading your story. Thank you for bringing some much needed awareness to SMA!! www.familywithgusto.blogspot.com
Avery, you have the most beautiful smile (: Thank you for sharing your story and spreading awareness about SMA. You are truly an inspiration!
Here are a few more suggestions for your Bucket List: • Witness an eclipse • Be a film extra • Catch fireflies • Go to a drive-in movie theatre • Plant a tree • Bake a cake • Send a message in a bottle • Walk the Red Carpet • Ride in a Hot Air Balloon • Break a Guinness World Record • Make a scrap book • Sleep in a Castle
Avery your a true inspiration to millions of people :) God blessed you with such awesome parents! My name is Makayla im almost 3 months old my mommy was reading that you might come to the San Diego zoo, if you do let us know I would love to meet you I live 3 he's away from the zoo. God bless you and your family
Wow. Avery is an absolute blessing and inspiration, and I'm sure she isn't even aware. You two are wonderful parents and people. I may not know you personally, but you have really touched my heart. I thank you for sharing, and will pray for y'all and other SMA patients like Avery. May God continue to bless you.
[Radio Interview Request] Dear Avery, Please share your inspiring story with us! My name is Heather Jung and I'm with a talkshow on radio called "1013 Main Street" on tbs eFM. The program is hosted by Ahn Junghyun who was the former presenter for the Pyeongchang Olympic Bidding Committee. She was also the main host for the B20 Seoul Summit held last year.
We were wondering whether we might be able to interview on our program. We will be happy to have you talk in our show by phone interview. If you are interested and have the time to speak with us, please let us know.
Your respectfully, Heather Jung mainstreet101.3@gmail.com
My name is Heather Jung and I'm with a talkshow on radio called "1013 Main Street" on tbs eFM. The program is hosted by Ahn Junghyun who was the former presenter for the Pyeongchang Olympic Bidding Committee. She was also the main host for the B20 Seoul Summit held last year.
We were wondering whether we might be able to interview.
We know that you are extremely busy, but we will be happy to have you talk in our show by phone interview. If you are interested and have the time to speak with us, please let us know.
Oh Avery, you have stolen my heart, girl!! I thank God I found your site and am able to read about your very special life! You've inspired me and I know countless others in the very short time you've been telling your story! You're making a difference and I believe with all my heart you're saving more lives than you could ever imagine. To your Mommy and Daddy, how incredibly blessed you are to have been given sweet Avery. She chose you for a reason and the love you both have for her is beautiful. Thank you so so very much for sharing your sweet, wonderful girl with the world. I am honored to help pass her story along and will keep you three (and the rest of your precious family) in my prayers! Keep living life to the fullest, Miss Avery, you are rocking it!!!
Avery darling, you are so beautiful and wonderful and my family is so happy to have come across your site. We suggest adding to your bucket list:
Ride in a police car Ride on a Firetruck Have a picture made with a police officer and a fireman Ride in a NASCAR car ( your daddy might be all for that!!)
Keep writing us sweetie!! And I promise to harass Ellen on May 1st all day long!!!
Hi sweet Avery and Mom and Dad, I finally caught up on your blog. I've really been enjoying it. I'm so sorry for the evil SMA and the diagnosis. I hope you have an awesome life Avery, no matter how long it is. It sounds like your parents have a great attitude and a good sense of humor Avery. It sounds like they'll make lots of good memories. I don't think you could have better parents. I think a lot more pitchers would love to take naps like you did. I'll be praying for you. Maybe you could play with a cat one day. I have a cat you would like probably, but I live far away. Here are some ideas. 1. Go to a concert. 2. Go sledding. 3. Wear jewlery 4. Make Mommy bed and breakfast and draw her a picture for Mother's Day. 5.Laugh 6. Have a slumber party 7. Dance 8. Sing 9. Go to a beach 10. See the ocean. 11. Be a big sister. Best wishes to you and your family.
Hey there, my name is Caden Sager, 15 year old SMA type 2 patient. When I was in fifth grade I made some poems that reflected on my own hope. Hang in there.
I’m calling, hear me.
Catch me, I’m calling.
I’m falling.
Catch me, I’m calling.
You caught me. You heard me.
I wish I had a month for every weekend to play. I wish I had a week for every day to work. I wish I had a day for every hour to sleep. I wish I had an hour for every minute to dream. I wish I had a second for every school day to gain. I wish I had a half a second free of pain. I wish I had an eternity of wishes. I wish I had a magic wand to make all my wishes come true.
My monster is different than yours… the boogie man or creatures like that. I have a different monster, and that’s a fact.
My monster has trapped me and many more… he is a creature not found in lore. He is neither man nor beast, but still he spreads evil and horror.
My monster takes me and shakes me… he pushes me around. He makes me look like a clown. There is no cure for him to be found.
My monster has odd friends… Cancer and AIDs, all that cause pain. They play their victims like pawns. Theirs is nothing more than a sad, sick game.
My monster wins many battles… but war has been waged. Strategies have been made, trials are engaged.
My monster doesn’t know… it’s us he should fear. Know this Monster SMA, our victory is near.
Day by day we live with hope Day by day we get back up Day by day we live the fight Day by day and all through night.
Each Snowflake counts as a hope for the cure to come When a snowstorm happens hopes collide in anticipation of the wish to come true
What if I could cure SMA? I might help the children walk today.
What if I could stop the wars? I could spread peace and open doors.
What if I could do more? I would help the needy and the poor. What if?
Spirits moan and spirits groan, as the curse of the disease takes its toll.
The spirits fight day and night until the cure day comes… until the cure day comes…
When shadows and light ignite when the cure day comes… when the cure day comes…
Hi cutie patootie!!! i just found your blog and i think your so cute!! i saw your bucket list and it said that you want to visit NYC. do you want to visit me? there are lots of people and places in nyc for you to see. yu would like times square! bye avery! :) have a happy day beautiful!!! and come visit me sometime, okay? i would love to see you!!! :) bye cutie!!
Oh my, Avery is the most beautiful child! Thank you so much for inviting us into your world and for the awareness of SMA. I was an EMT in Houston in the late 90's, and having little ones in our ambulance troubled us the most and got the most prayers. Someone suggested her going to New York. If I can get your permission to use her photo, as I am traveling there in June, and would love to at least use a photo of her in front of all the landmarks, and I am going to a Yankee vs. Rays game, so she can be there. I hate posting my e-mail in comments, but it is swarren07@MSN.com (its a zero, not an o). I've been an EMT, have been in the Navy 12 years, and do what i can to help anyway I can. God bless the entire family and hope for a miracle for Little Miss Avery!!!
Hello! I am here to represent a business that is interested in helping Avery reach her donation goal toward SMA awareness by selling a bracelet specially made in her honor. We'd love to give her yet another special accomplishment to cross off her bucket list! Please visit our page to find out more about us at http://www.cathyscreationsjewelry.com! Also, view our cause jewelry, the line Avery's bracelet will be listed under, here: http://cathyscreationsjewelry.com/Cause-Jewelry_c3.htm. All proceeds from Avery's cause jewelry would be directly donated to SMA awareness in her name, per your wishes. Finally, here's a link to our Facebook: http://www.facebook.com/cathyscreationsjewelry. Please be in touch, we'd love to find out more about Avery and also be able to collaborate with you on this project for Avery! cathy@cathyscreationsjewelry.com
Hi Avery, we just wanted to tell you we say a prayer for you and your amazing parents every night. Even Makenzie gives a kick in my tummy during prayer. We know your dad and what he is doing is absolutely amazing!! Hope to meet you soon!!
Love the Kiker Family, Cole, Stephanie, Baby Makenzie and Zoe (puppy)
I am so devastated to hear about the difficult ordeal little Avery has to go through. Thanks for sharing her story and shedding light onto the important cause of SMA detection. I had seen the blog a few days ago and was touched, then I was touched even more to hear that Avery was born the day before I got engaged and diagnosed the day before I got married. It is kind of crazy to think that between that time, a child's life could be changed in ways maybe even more significant than my own.
How about creating a special website that makes it easy for you to fundraise and reach the goal of raising 1mil to fight SMA? I can help you get this going: http://nationbuilder.com -- please get in touch with me and we can chat to see how I can help. You can track it all and send it straight to FightSMA. Much love and light your way.
A few items to add to your list(if they're not already there): Have a picnic with family and friends Catch fireflies Draw in the dark with a sparkler Go for an evening walk just to enjoy the beauty of life and be sure to smell some flowers Plant a tree in your favorite spot so you can always remember and go back every year to see how much it's grown Dig a BIG hole in the backyard to see if you find something cool like dinosaur bones or the secret passage to China Bury a time capsule with an important/meaningful item from each of your friends/family/SMAns who want to help. Give your valedictorian speech at your graduation(have to dream big) Become the first female president(again, dream big)
Avery, I am so glad to see another brave face bringing SMA to the spotlight. My brother has SMA type 3. He is 18 but struggles everyday to do average things. My cousin also has SMA type 2. Our family is thinking of you. Thank you for your courage and strength. I am hopeful we will have a cure!
Dear Avery and parents, My son was diagnosed with SMA type 2 in February. It was a total shock. We already have a healthy daughter and were expecting our third (who is here now and negative for SMA). I am so sorry to hear your news. I love how positive your family is and your goal of raising awareness for SMA. I feel very hopeful that a cure will be found my son's lifetime for this disease. Here is a tiny bit of info regarding the amazing research going on. Project Cure SMA has run 5 clinical trials with an overall investment by FSMA of $6 million to date. http://www.fsma.org/Research/Clinical/ProjectCureSMA/ SMA is caused by a defect in the "Survival of Motor Neurons" (SMN1) gene. Researchers are hopeful to find a cure, because nature has provided humans with a second gene, almost a copy of the SMN1 gene. Normally, the second gene does not contribute much, but researchers think that its function can be increased by medications. http://www.columbiasma.org/research.html Currently, there are almost a dozen drug programs ongoing in SMA. They are at many different stages of development, from the earliest stages to more advanced stages. http://www.fsma.org/Research/News/index.cfm?ID=6199&TYPE=1158. I also thought it might be helpful to point out that SMA is s neurological disease, not muscular. Here is another link: What is SMA? Spinal muscular atrophy is a degenerative problem that affects the motor nerves, resulting in muscle wasting and weakness. Spinal muscular atrophy occurs in approximately one in 6,000 -10,000 live births. http://medicine.utah.edu/neurology/research/swoboda/sma/ There are millions of genetic diseases and testing that could theoretically be offered to every person wanting to have a family. But this is completely unrealistic and insanely expensive. And what do we then do with this information? It starts to become an ethics issues (anyone remember Gattaca?). A better way to use our time, money, and resources is to donate to research to find a treatment and ultimately a cure for this disease! It would be so awesome in your efforts to "go viral" if you could help spread the word about research and encourage donations in this respect. Sending love, hope and encouragement, Lynette
Just checking up on you tonight. I think of you often and your parents. I did leave a msg for the Ellen show on fb for you. I think she's worthy enough to have you on her show. You might be even more popular than her :-) I thought of one more thing to add to your bucket list -- a Mani and a pedicure. You will be in my prayers tonight, sweet baby girl.
I discovered your site a couple days ago and you haven't left my mind since. I have shared your site on facebook and by word of mouth. I have even been inspired to do more research on SMA. Thank you for sharing your story and raising awareness for SMA. I have bee trying to come up with a unique way to help you spread the word, I have one idea I'm playing around with, but in the meantime I wrote an article on my examiner.com site (Cleveland). If you wish you can find in by the title "What is SMA" I naturally put a link to your blog. Thanks you for sharing your story with the world.
Yes, please put a link on the sidebar about what SMA is so that people who come here can know instantly. I loved reading through this and hope that you can educate a lot more people. I am attending UH and hope to go to their law school for Health Law. Virtually "unknown" diseases and dumb insurance practices (like not offering or not covering it) are things I want to change - starting with Houston. Good luck - can't wait to read more.
Avery, you are such a beautiful soul! You and my daughter share a very special birthday! :) I am praying for a cure, and for all the happiness and joy that could possibly come to you and your mommy and daddy.
Hi Avery, you are an amazing wee girl and you are so very lucky to have such inspiring and loving parents. I have just read your Blog and it was heart warming and made me smile boy you have covered a lot!!
To your parents I send you my love and think you are true role models for other parents and families out there, what a fantastic and truly remarkable idea, such a respectful way to honour Avery.
I wish you all the best from Lisa-Marie Muir, in Dunedin, New Zealand
Olivia i was just about to comment that she should definitely add to her list a professional photo shoot. So glad somebody offered. And Avery, i'm gonna send you a gift soon. I hope you'll enjoy it. Cristina
sevgili avery, (dear avery) blogunun gordugum anda sana hayran kaldım.. (i fell in love with you when i saw your blog..) Istanbuldan kucak dolusu sevgiler ve dualar seninle.. ( hugs of love and prays are with you from istanbul..) mucizelere inanmaktan asla vazgeçmeyin... (never give up believing the miracles) Allah her zaman yanında olsun inşallah.. ( Let god be with you averytime inşallah..)
This is just so beautiful!! one of my best friends had a baby who passed away from SMA type one, and I did not know about SMA and the effects it has. This is such a great way to raise awareness!
Plus Avery you are such a gorgeous baby. :) Thinking of your family.
All three of you are such an inspiration. I'm amazed at how positive and upbeat you all are, it's incredible. Avery is such a beautiful little girl. All the way from Australia, I salute and support you! I've donated $25.00 in your name to fight SMA. God bless you all. xxx
You guys are a wonderful and beautiful family! I loved your blog Avery and cannot wait to read about all the wonderful things you are doing. What an inspiration you are!
Hi Avery, you have made all the news here in Australia today and I have had a lovely time reading your blog. I am a mad sewer and would love to make you a girly dress....girls can never have too many dresses in their wardrobes. What size clothes does your mum buy you ? Would you like a matching bow for your beautiful hair as well ? Stay safe and love life hugs Carlie from Australia
I just found your blog through a news report. Its good to see you being a trooper through all this. I have traveled around a lot and From my trips I off you a few ideas.
1. Go to an Anime convention (This are cartoons that were created in Japan. A few that i liked are Bleach, Trinity Blood, and Inuyasha. Check your area to see when one is coming up in your area. Most the one I have been to are in the Ohio area but you can look them up and see if you want. the Ohio ones are: Colossalcon and Matsuricon.)
2. Visit the White House (Hey even you should get to see where the president live.)
3. Visit Lady Liberty.
4. Go to Japan and visit one of the Shinto Shrine (I have not gotten there yet but i have heard that they are really cool looking and you can make a wish :) )
Dad to Dad, my heart goes out to you. You are an incredible man and a reminder to parents everywhere that we can always make more money, but you can't recreate memories. Tonight my wife, children and I are going to read your blog together and come up with our own way to contribute to the cause for SMA as a family! Enjoy every second of every day and know how much your actions mean to so many!
Avery and family, Y'all are remarkable people. Especially you Miss Avery. I love reading your story with my little kangaroo (my 7 month old son) Harrison. I want to thank you and your wonderful mommy and daddy for sharing you SMA story. God bless and Love from West Virginia, Brianna and Harrison
Hi Avery, I just read your blog today. You are such an inspiration to everyone. I lost my baby a year ago at 35weeks in my womb and never got the chance to do stuff with my little angel. You are lucky to have a chance to see and experience the world, so keep on smiling and keep inspiring people.
A POEM FOR YOU: When Tomorrow Starts Without Me…
When tomorrow starts without me, and I’m not there to see; If the sun should rise and find your eyes, all filled with tears for me; I wish so much you wouldn’t cry, the way you did today, while thinking of the many things, we didn’t get to say.
I know how much you love me, as much as I love you, and each time that you think of me, I know you’ll miss me too; But when tomorrow starts without me, please try to understand, that an Angel came and called my name, and took me by the hand, and said my place was ready, in heaven far above, and that I’d have to leave behind, all those I dearly love.
But as I turned to walk away, a tear fell from my eye, for all life, I’d always thought, I didn’t want to die. I had so much to live for, so much yet to do, it seemed almost impossible, that I was leaving you.
I thought of all the yesterdays, the good ones and the bad, I thought of all the love we shared, and all the fun we had. If I could relive yesterday, just even for awhile, I’d say goodbye and kiss you and maybe see you smile.
But then I fully realized, that this could never be, for emptiness and memories, would take the place of me. And when I thought of worldly things, I might miss come tomorrow, I thought of you, and when I did, my heart was filled with sorrow.
But when I walked through heaven’s gates, I felt so much at home. When God looked down and smiled at me, from His great golden throne,
He said, “This is eternity, and all I’ve promised you”. Today for life on earth is past, but here it starts anew. I promise no tomorrow, but today will always last, and since each day’s the same day, there’s no longing for the past.
But you have been so faithful, so trusting and so true. Though there were times you did some things, you knew you shouldn’t do. But you have been forgiven and now at last you’re free. So won’t you take my hand and share my life with me?
So when tomorrow starts without me, don’t think we’re far apart, for every time you think of me, I’m right here, in your heart.
I just seen your blog through a news report. Its good to see you being a trooper through all this. I have a couple things to add to your bucket list from my travels.
1. Visit the White House (Hey maybe you'll get to meet the President!)
2. Visit Lady Liberty (I'll let you in on a secret: She's really really nice.)
3. Go to an Anime Convention (Anime is actually Japanese style cartoons. They are actually pretty cool. Ill give you a couple to check out: Bleach (yes its named after the cleaner), Trininty Blood, and Inu-Yasha. Look and see what there is in your area, and I have a convention coming up in June that I am going to so if you want I can send you some picture to see what it is.)
4. Go to Japan and visit a Shinto Shrine (I have not gotten there yet, but from what I have heard, they are really neat and you can make a wish.)
I found your blog over the weekend and was truely touched. You are a fighter and your parents are so blessed to have had you. I have an 18 month old son and could never imagine being placed in this situation. Kisses and God Bless.
I am 20 years old and from Australia and found this blog after looking at my internet news. I read the whole blog and numerous times cried my eyes out, you see, one of my close friends is 20 and has muscular dystrophy and I have seen the effects, but at the same time, I have seen how close it can bring people together. This is a perfect example of that and the reaction astounds me. Avery is the most gorgeous little baby ever (and considering I have a 7 month old brother with down syndrome that is a generous statement. I will continue to follow this and think of her often. Sending love and prayers to all your family and friends. x
Oh my...words are not sufficient. I've always believed that everything happens for a reason; that God has a purpose for every person in his world. And while it may be heartbreaking at times to watch events unfold, your story shows us all how to make the most of them.
I am humbled. I have a very new appreciation for the pain in my life. Thank-you does not even begin to express how you have touched me.
I saw your story on FoxNews. Bless you for making the best of the situation. I pray for your strength and abundant blessings. This blog is touching, adorable, witty, and beautiful.
You guys are all so awesome! What a great way to make a horrible situation beautiful and positive. This journey is a living testament to your beautiful daughter's life and give it a great purpose no matter how long or short it may be. God has a purpose for all of us here and your bright spirit is why he chose you to be Avery's parents. You have made her story now perhaps reach millions of people all of whom in some way have Avery in their thoughts, hearts in minds, even if it only a moment. I wish all of you the very best, strength, laughter, faith, joy and peace with your personal journey! *hugs* and *kisses* for your angelic Avery. God bless.
Iam praying for her, have seen many healings in my day, God is still in the healing business,I Highly encourage you to read the book heaven is for real, a real eye opener and game changer, God Bless, Jym Tyo
While the day here in South Carolina was a little dreary, you caused my morning to be full of sunshine! You are so very beautiful!
You, and your parents, are such a wonderful inspiration. I often forget that life is what you make it, and I can honestly say that knowing you will help me remember that on a daily basis. I do not have a little girl, but I do have a little boy that would have loved to have been your first kiss. If I did have a little girl, I think I would want her to be tough and be able to hold her on in any situation. Reading your story shows me that you meet this qualification to a tee!
A few things that you may want to add to your list include helping Dad pick out a present for Mom and helping Mom make a cake for Dad!
One thing you can cross off your list is being tough enough to make a mean old lawyer cry....
I am praying for you and your family, asking that God make each day special and full of all the blessings that you deserve.
Bravo to all those who are helping Avery accomplish her bucket list!! What an incredible gift to her...to her parents...to all those who know her...to all those who are inspired to step outside of themselves to help a stranger!
You are such a beautiful little girl! I will follow you on your journey with many many hopes for you and your mommy and daddy. I'm a mommy myself with a 2 year old daughter and two older stepchildren. Your parents are truly inspirational and have made me want to be a better mommy. I promise I will take more time with them, listen to them, and do good things for them.
Thank you Michael and Laura for opening my eyes during a time when I needed it the most.
So touched by your story. I had heard about you on local news (KHOU) when your story aired there and have since read every entry on your blog. I'm contributing a smile to your babycenter album in just a moment from my daughter Lexi. She's a little older than you (10 months old) but would love to be your friend!
Love seeing your story spread. I'm a mommy of 5 already so I won't be needing this screening myself but as a CF carrier, I know how easy testing can be. So, next time I see my OB/GYN, I'm going to see if she's offering this testing to patients who are planning to have babies! It's a small thing to do and could make such a difference! I'll pass your site on to her as well. I've already told as many of my coworkers and friends as I can!
Bravo to all those who are helping Avery with her bucket list. What an incredible give to Avery, to her parents and family, to those who know her, and to those who are inspired by her story. Blessings on all of you on your journey.
Hi Avery (and Mommy and Daddy) I came across your story and can only think of one word, albeit a long, over-hyphenated one... "AMAZING-AWESOME-INSPIRING-LOVING-FUN-PERFECT"! I must admit I am humbled by your parents' strength and courage... so much so I shared your story with coworkers and found you on Facebook, too, to share all your wonderful accomplishments and do my tiny part in helping to spread the word for you about SMA.
By the way... The Rangers play the Astros in mid June in Arlington and I noticed your Daddy wants to take you to an Astros game. Perhaps I can help with that... let me know. You can reply here if your Daddy and Mommy would like ... and I can get in touch with you thru Facebook.
Hi Avery, Mommy, & Daddy! My name is Katie Hock from Nashville, TN and I am so incredibly touched by your story! In 2006, the doctors were telling my parents that I would not make it through the night after I was involved in a near-fatal car accident. Not only did I make it through the night, but I defied the prognosis that I’d never use my legs again as well. Now I’m RUNNING around trying to touch the lives of people who touch my heart. And that, my dear child, is YOU!
I want to help you in any way possible…..but I will say that the one item on your Bucket List that caught my eye was “Have a father daughter dance while watching Father of The Bride”. I realize this is on your “I’ve got it covered” list, but I would love to help you out! I have pinpointed the perfect venue (it’s actually a historic movie theater in Nashville that has a dance floor and plenty of room for Avery’s supporters to come dance and watch the timeless movie) and I would be honored if you would join us for this fundraiser.
I am mailing you a letter with my contact information in it today (should be arriving in the next couple of days). I pray that you will give me a call and that you would consider joining us for this event (travel will be on us). This fundraiser will be held in Avery’s honor and all proceeds will be going to fightsma.
I am so touched by your story, Sweet Avery, and by your bravery. I am completely amazed by the courage of your amazing parents. What a wonderfuly family you have! THANK YOU for educating me about SMA. Now that I know about it, I will pass along what I know to others. See what a wonderful thing you are doing?! Educating thousands and thousands of people every day and touching their lives in ways you can't even imagine! Please know that you are in our prayers every single day...and we are praying for your Mommy and Daddy to hold onto their courage and strength. We know they will, because you will help them to be strong.
Thank you for touching our hearts and telling your story, Paula and Michael Whisenant and your newest friend, Drew, age 24 months
Avery, mom and dad...my brother shared your blogsite with me. What an incredible attitude and perspective you have! My niece was born last spring, and because of her physical condition, only lived 26 days. We struggled to understand why God would create her this way. We know and believe that He is soverign. Our sweet Maggie is whole and healthy and singing with Jesus now. Maggie, in 26 days, was a testimony of God's love, even if we don't understand it. I appreciate your positive attitude and your willingness to take it all by the horns. I plan to follow your blog and enjoy watching how God is using Avery for His glory. I'll also be praying for you and your family as I think of you. That God would be merciful to Avery, and that He will draw you to Himself if you don't know Him. If you do know Him, I pray that He will draw you even closer to Himself. God bless, Amy D. Dallas, TX p.s. I noticed that on your bucket list post, you need to cross out, "throw the first pitch at a baseball game"! p.s.s. We're Packers fans too, and i've never been to Lambeau either. Hope you find a way to be a cheesehead, Avery!
Way to go my little friend, over 2M already. You are truly a hero, I am very proud of you and your mommy and daddy. I am sure you will have the longest bucket list ever, and know you will get to do every single one. With all that power you all 3 have, I have no doubt you will, even graduating from college and getting married as your daddy dreams! KEPP IT UP MY LITTLE FRIEND, we will keep doing our part on spreading the ugly word SMA.
Hey beautiful princess :-) Your blog was just posted on AOL and OMG it is sooooooooo inspiring. My mascara is practically down to my chin, I cant stop myself... as I'm reading all the way from the beginning of your blog, tears coursing down my face, uncontrollably. Avery, you're teaching a mighty lesson to the world. #1 its the awareness of SMA as well as #2 Gratitude and appreciation for life. As we look around us, we should be ecstatic that we get to spend time with our loved ones and be so grateful for our precious children, parents, siblings and spouses. You're the luckiest little girl to have parents like yours. I'm sure they cherish every blessed moment they have with you.
Amazing, 2 000 000 of page viewed, wowooooooo ! Are you imagnied that !! SMA got viral for real , yahoo !!!!! And you sweet Avery and parents too. Hope for a cure !!!
YAY!!!! I SAW YOU THIS MORNING ON FOX 8 NEWS CLEVELAND,OHIO THIS MORNING!!! AND I'VE BEEN SPREADING THE WORD ABOUT YOU ON FACEBOOK AND THROUGH EMAIL. ALL OUR THOUGHTS AND PRAYERS SWEET GIRL!
My name is Leslie and I was diagnosed with Type 3 SMA at the age of 3. I am now 41 and although my condition has gotten quite worse over the last 5 yrs. or so, I still live independently in my own apartment. I realize your daughter and I have a very different prognosis but I had a friend in college who had Werdning-Hoffman. Yes! She was in college! Her name was Nicole and she was an Art Major. Yes! AN ART MAJOR! She painted with her mouth and she dressed like a crunchy-granola hippy! She drove her wheelchair with the tips of her fingers and got herself around campus to her classes and activities and PARTIES just like everyone else! She always smiled and was a happy person. She even found a wonderful boyfriend! After she graduated I lost contact with her so I can't say if she is still with us today (some 20 yrs, later). But...my point is... doctors don't know everything. Avery may surprise everyone and see lots of those wonderful things you envision for her! Have hope for her! And for yourselves! Remember most of us are quite precocious children! We will keep you on your toes! Good luck to your family! You will be in my prayers!
What if I want to send you something that won't fit in a PO Box? I'm thinking with the help of mom and dad, you could put a push bike on your bucketlist. I realize your only 5 months but the sky's the limit little lady!!
When the time comes it might be an option to have a tracheostomy placed and use a ventilator to maintain ventilation. Also there are cough assist machines and suction equipment available for use to maintain airways. Also having a G-tube/Mickey for tube feeding may be an option for nutrition. And for mobility it may be an option to get a rod placed in the spine and wear a brace to maintain an upright position to ride in a wheelchair while strapped in for support. Also a team of nursing/family care may be able to make functioning possible. I am aware of a 13 year old with this condition which has been capable of living a happy fulfilling life functioning effectively with the use of medical equipment and the help of an adoring team of family, friends and nurses. It may sound like an extensive amount of stuff to sustain life but if the possibility of the patient and family continuing to enjoy a fulfilling life together exists from my experience it is worth exploring all of the options that are available with the help of the patient's doctors and healthcare specialists.
Hi! I have been so touched by your story. I had never heard of SMA until my daughter shared your blog with me. You are such a brave little person with an awesome family! I have somethings you need to add to your bucket list....be seranaded by some super mcdreamy guy, go to the prom, have a father-daughter dance. Love and kisses are sent your way. Lynn Presley
I have to write this for my Mommy, since she's crying reading your story. And hugging me tight and being all kinds of obnoxious. Man, these people are clingy.
I think I'm in love with you! You have such a beautiful smile...and man, who couldn't love a girl with that kind of pitch? Anyway, I'm pulling for ya girl.
Keep those parents of yours in line! If you give em an inch, they'll take a mile!
Just heard your story from the news,Avery. Thank you for sharing your story to all of us. What you make me believe is that life is really WONDERFUL! I like your lovely smile, and it makes me smiling till now:) God bless you!
Hi sweet baby Avery! You have a new friend in Austin, TX. How lucky you are to have such sweet parents! I am excited to follow your journey and see all of the neat things you are getting to do!
Avery - you and your family are a true inspiration! You are all so very blessed and lucky to have one another. Thank you for sharing your story. You have touched so many people, me being one of them...you have changed my life hearing your story - Thank you! You are in my thoughts and prayers.
I'm a pediatric nurse at Nationwide Children's Hospital in Columbus, OH, and have cared for a handful of children with SMA. I came across your blog on a friend's facebook page and was reading through your posts when I saw you on TV on the local news! Anyway, I love the SMA kids! I remember the EYES of each SMA baby that I've met! They are so expressive and say so much! Thoughts and prayers are with you! Will continue to follow your story!
Baby Avery, you are so lucky to have the support system that you have; especially your mama n daddy. God works in mysterious ways but little Avery you are affecting so many lives and I'm sure will continue to affect many more until the end of the time. You will live on forever sweet angel. You are 2 months older than my baby boy, Anthony and he has informed me that he's really interested in older women. (uh oh) :) we live in deep South Texas and if you are ever up for a trip to the Beach (South Padre Island) we'd love to be your companions. Hugs and kisses precious.
I just saw your story on the news and don't want this to sound wrong, but I was so excited. Our daughter Madison was diagnosed with SMA type 1 on February 7. She is 7 months old today. We have the same outlook as you on this. We want her to see everything she can and have the best life possible. She had to get a G-Tube on March 21 and has been growing like a weed since then. I am so thankful that there are others out there who are trying to get the word out about this. I'm sure you've found it, but I'd not, curesma.org is the most wonderful organization. They send you a welcome package with multiple toys and other things and also have carbeds that they send out for you to use as long as you need. The carbeds are fantastic because you no longer have to worry about there heads flopping in the carseat. I am so sorry for what you're going through, but it is nice to know that we're not alone :)
Your story is so unique - full of inspiration and action. We posted a link to Avery's blog and to the SMA website on our blog this morning. We hope this helps spread the word. http://permissionslips.wordpress.com/2012/04/30/making-your-bucket-list/
You are such an inspiration. As a mother reading your blog breaks my heart but I am so inspired and proud of how you are teaching everyone about this illness. I check your page daily to watch you cross more and more things off your bucket list. My prayers are with you and your family.
I have taken care of a beautiful little boy that has SMA. The little guy I took care of is still with us today. He will be 5 yrs old in June. He has a special diet and lots of equipment. He has been involved with a study in Utah. His parents have been to Washington DC to fight for him (and his brother who has passed).
I would be happy to talk with you and connect you to his parents. Find me on FB as Kim Lawrence in Owensboro, KY.
I was able to get a Bill passed in the KY Senate to educate people about Spinal Muscular Atrophy. So, I am sending you prayers and hope for little Avery!
Come to San Francsico and go to the Basic Brown Bear Factory.
I would consider it an honor to add to your stuffed animal collection.
And please let your parents know that I think they are very amazing people. At times like this most parents would want to sheild themselves, and spend all the time they could just being with their child. But, your folks are out there trying to educate people. I think that's just amazing!
Beautiful Avery your smile is contagious. :) I just wanted to say hello from your friends here in Ontario Canada. I look forward to reading about what exciting adventures you go on. I have shared your story with my FB friends and have posted a link to your blog on Ellen's FB page.
Dear Avery...I have a blog too, and added your beautiful face (hope you don't mind) and a link back to your blog up on the very top of mine today. I hope to send lots more friends your way, each one interested in spreading the word about SMA. Love to you and your wonderful parents (especially dad for keeping up with a blog for you...boys don't particularly like writing), precious little one!
Hi beautiful girl! I'm sharing a link to your blog on my blog tomorrow (May 1) in hopes to spread your story and spread awareness. You are a beautiful, sweet little baby and I wish you love and happiness. http://amysreallife.wordpress.com
Hello Avery! I just came across your blog after reading a news article online. It was on an Australian news site, so your story has travelled a long long way! Half way around the world! I will be bookmarking your blog, I will follow your journey, and I'm hoping that, even though I am so very far away, there is something I can do to help cross another thing off your bucket list. Such a pretty little girl, keep fighting!
Hey baby girl, I just started reading your story. I will most certainly pass it on. You are a very brave little girl. And I hope you are enjoying every minute god gives you here on earth. You deserve all the happiness in the world. Just fight for mommy and daddy, ok? They love you very much. And so do we. Hope to see more from you for a long time. I will check back tomorrow for an update :) youre book marked :)
Hi Avery, I am grandma to three beautiful little girls, who were not that long ago little wee girls like you! I have something to put on your bucket list, a sleepover at grandma's house. My your mom and dad could go out for supper and grandma and grandpa could have a very special night with you they would treasure forever.
G'day! Sarah from Australia here. Australia is a long way from where you live, on the other side of the world actually! Your story made it onto the online newspaper i read here in Oz and it has really touched my heart. I'm going through some struggles at the moment in my life and reading your story has made me realise i need to push past them and keep living as you and your mommy and daddy do. I'm so glad you have had the opportunity to meet you through your blog and learn about your story.
I do have a couple of things i think could be added to your list- - Pat a Koala - Jump with the Kangaroo's - Hold a snake It'd be great if one day you could do those things in Australia but if not there are some great zoo's in the USA, where you live, that have these animals and might be able to help you out!
I hope you don't mind i'm going to give you a mention in my blog during my next post!
I know i can't hug you in person but here is a cyber for you!
Hi Avery! I'm Matthew. I'm 3 years old and was also born on November 11th (Veterans Day). I was diagnosed at 19 months with an extremely rare disorder which caused me to have seizures, one which lasted over 4 hours and nearly killed me. But I believe God let me live for a reason, and I believe He has big plans for you as well. I know I am a little older than you, but I would like to ask your father for permission to ask your hand in marriage, if you will have me. Please check yes [ ] or no [ ].
After reading you story and blog we held our daughter (7 months old) a bit more today. We made a donation to the FlightSMA website in your honor and will be spreading the word about SMA. Keep on living the most everyday. Thank you!
Hello Avery Lynn! I just wanted to let you know that you make me smile! I read each of your posts, and I smiled every time I saw a picture of beautiful you. I think it's funny that you keep score - and it's even more funny that Daddy is always behind. :) I left you a bucket list item on Facebook, but I wanted to leave it here too. You must add "eat chocolate ice cream" to your list, if you haven't already! (And if you really want to live on the edge, make that chocolate ice cream, with Hershey's syrup squirted on top!) My Carleigh, who had Trisomy 18, never got to taste chocolate ice cream, and it's something that I highly regret.
Your friend, Andrea http://carleighangel.blogspot.com/
Dear Avery, I lost a cousin 13 years ago to SMA. Our Allie-Belle went to Heaven 18 days before her first birthday, and like you, she fought hard to live while she was with us. She never lost her smile. Thanks for bringing more attention to SMA. You are an amazing little girl with an amazing family, and your actions will bring a cure that much closer. You're all in my thoughts and prayers.
As for your bucket list, I think you should ask your mommy and daddy to buy you a star and name it after you.
One of my family clients when I worked in early rehab, had a daughter diagnosed with SMA - at 2 parents realized she may live longer, so we got her into a power chair, at 5, they realized they could go to school... she's over 11 now, lives in her power wheelchair and has limited motion but is having a ball in life. Hope something like this happens for your little girl. If not, enjoy every day - she is!! It's tears and smiles time.
Canahuati's, I am impressed by courage! Thank you so much for being courageous and selfless enough to share your journey with us! I love you all and am praying for you! Jessica
Dear Avery, you should bake something in an Easy Bake Oven. (Don't worry if you burn it, that's part of the fun.) I had a friend growing up with SMA 1, she ended up crossing a lot of things off of her bucket list including living away from home, and getting an associates degree. Most importantly she inspired me throughout her almost 30 years with her come what may and love it attitude. With 4 kids of my own now as I read your blog with smiles and tears, I have been reminded to pay more attention to the things in life that are really important. Your parents are simply amazing. Thank you. And may many blessings come your way!
Hi sweet Avery! Wow, you're living life to the top! You've done many things most of us would have liked to do in our lives! And your parents are so amazing to go on this great adventure with you!!
You're a inspiration, and from now on, you'll always be in my prayers...
I seen your story on channel 19news and had to stop by and say something. My daughter has SMA type 1 and they told me she wouldnt live to see the age of two. She will be 11 next month! You have to have faith! I almost lost her when she was 2and a half but with her strength and Gods she is still here! She has trach but thats what helps her breathe today! I take her with me everywhere I go! Shes been driving a powerchair since she was 3! She is smart and amazing! Just keep believing and God bless all of you!
Avery, if you were in central Ohio, I would invite you to be in our upcoming dance recital. Since you are far from here, ask your mommy and daddy to contact a local dance school. I'll bet one near you would let you be a pretty princess ballerina in their recital. Every little girl should get to be a ballerina at least once.
What a beautiful way to celebrate your life. My heart is so full and I am crying as I type this. Your smile is infectious, Avery. You are beautiful and I love all your bucketl list ideas. You were blessed with wonderful parents. I can't wait to see more pictures and see what else you are able to cross off your list. You will be in my prayers.
Hi Baby Avery! DJ Pauly D is appearing on Ellen tomorrow, so some of your friends & I have been asking him to give you a shout out while he's there. I hope we can help you accomplish your goal of being on the Ellen show! We also let her know about you on her "Inspirational People Page". Keep smiling & keep living baby girl. Xoxo
I don't even know you sweet Avery, but I love you! I love coming on here to read what you've done and seeing the pictures, you make me smile with your beautiful smile!!! :) I have a 5 month old also. And a 3 year old and an almost 5 year old, all girls!! I've shared your blog on my Facebook and I will continue to do that. I'm always thinking of you and keep you and your family in my prayers!
Avery is so incredibly beautiful, and about the same age as my youngest, Mia. Your story is incredible and we will follow your journey all the way. Mia would like to send Avery some mail- so check your box next week beautiful girl! It's coming from Canada! :)
Love Avery's blog! Hoping to make her bucket list wishes come true! I was honored to submit a letter to Ellen today. I will pray that #1 on her list comes true! I am a nurse, and never knew anything about SMA prior to reading Avery's story. Thank you for sharing and for your mission of spreading awareness. Prayers, Krista
Avery you have changed many lives and wanted to Thank you for spreading your message to the world.. I know you are in a place of wonderful things and people who will love you until the day you are with your mommy and daddy again.. You are very special. Rest Peacefully knowing you have done what you came to do...
It will be the little things that you will remember, the quiet moments, the smiles, the laughter. And although it may seem hard right now, it will be the memories of these little things that help to push away the pain and bring the smiles back again.
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
I'm so sorry for your loss family, Avery is in a better place that is free of the disease she and I share, SMA. We will all see here in Heaven someday. Rest in Peace Avery, you are such a brave little girl.
My deepest condolences to her parents and family thank you Avery for reminding me that there are more important things in life each and everyday than the ones I get stressed about. may you little angel rest in peace
The night tonight will be a little darker in this world, and a little brighter in heaven as heaven just stole one of the biggest and shiniest star from here.
My heart breaks for your family and for Avery. She was such a trooper and I love reading the blogs. She has touched so many lives in such a short time. That is a wonderful and miraculous achievement for even the tiniest of angels.
My heart breaks for your family, but you are in a better place. I pray for peace and comfort during this difficult time. I had the HONOR of seeing you throw the first pitch at the baseball game in Sugar Land. You are inspiring. God bless you all.
My heart goes out to you both. While I may not know how exactly you feel as a parent who has lost a child I can empathize with you. I have enjoyed reading Avery's blog and have rooted for her this whole time. My condolences to you both and to your family.
I am so sorry for your lose! But for the short time Avery was here she has filled the world with love and did more than some that live to a old age. I'm not a religious person but know this you WILL see her again. All of my thoughts and prayers are with you! Sarah from Florida
I'm a university student on scholarship and it's really hard to keep my GPA high in order to keep my scholarship. I saw your blog though Yahoo! news the other day and I just loved reading it. Today I had a pretty tough paper and I came home and took a nap, waking up to news about your passing is really sad and now that I've come to think of it, I could have made you a hair band after my exams and mailed it all the way to America (I'm currently living in Asia)and (I love making pretty little things when I'm free, I made myself a hairband yesterday :)) Your parents really love you and we love you and your blog :) You've inspired to never lose hope (SMA did take away your smile) and to not let the difficulty of my studies take my smile away or stop me from trying hard and praying harder daily :). Thank you so much for being a wealth of inspiration.
I am deeply sadden by your lost. I was aware of this devastating disease as a former co-worker of mine son has it. He started a nonprofit organization here in MS StopSMA.org and all the proceeds go to research for a cure as well. May God give you all continued strength.
Avery, you and your family are an inspiration to us all to live life to the fullest!
ReplyDeleteI LOVE IT!! now if only you could visit the BIG APPLE!!! (A.K.A NEW YORK) how awesome would that be. I'm a huge Philly fan myself but you have to be a tourist the there is no better place to go than NY usually. They copied our "Love" park and I think a picture in front of that would be so adorable! xoxoxoxox
ReplyDeleteYour Jersey friend
Shawnna
This comment has been removed by the author.
ReplyDeleteHow cooooool! Those Skeeters were very lucky to have you throw the first pitch:-)
ReplyDeleteFound your blog via Facebook. As a pediatric intensive care nurse at a large pediatric hospital I am unfortunately all too familiar with SMA. I am so glad you are choosing to make the most of every moment you have with your family. For such a young age you've done more than my girls who are 3 & 5! Keep it up!
ReplyDeleteYou have quite an arm on you Avery. That was a great pitch.
ReplyDeleteDear sweet Avery, I just started following your story yesterday and read every blog entry by night's end, and I must say you and your wonderful parents and grandparents are some of the strongest, most inspirational, and funny people ever! Your smile is infectious and beautiful! I, like many others, had never heard of SMA. I have 3 children (my youngest is a 10 month old named, Trenten, he is single by the way...I hear you like older men ;) and not once during any of my check ups did any of my ob/gyns ever mention SMA. I have already shared your story on my facebook page and will continue to share your story! Enjoy every moment checking off your bucket list and may God bless you and your amazing family!
ReplyDeleteWith Love,
Sabrina Silva from central California
I am so sorry for what you are having to face, but am so inspired by how you are facing it! Avery is a beautiful and precious gift to us all. Thank you for sharing your/her story with the world. My sister-in-law had a baby with SMA. I know it is devastating. If it encourages you at all to know, she and her husband went on to have two more babies...without SMA. Praying for you both and Avery! What a full life she is living!
ReplyDeleteNice pitch, Avery! You need to meet STEVE Avery, a former baseball pitcher for the Atlanta Braves! (That's who my 6-month-old Avery is named after...her daddy is a BIG baseball fan.)
ReplyDeleteThe video made me cry. Hugs to all...especially Avery.
ReplyDeleteawweee :) i love this <3
ReplyDeleteI have a few suggestions for your list
ReplyDeleteSit on santas lap
Build a sand castle
play in the snow
Hubba hubba indeed! What a day at the ballgame. I hope to see you tomorrow!
ReplyDeleteAvery...The face on the SMA postal stamp! How's that sound. If mom and daddy will make some stamps with your picture I'll buy some. (of course mommy and daddy will add a fee to the cost as a donation in your name.
ReplyDeletehttp://photo.stamps.com/Store/?sslr=true
Please, please make Avery our very own SMA stamp girl. I also posted on your FB about submitting it to the US postal service as an official stamp! How awesomw would that be?!
I honestly have no words, this is beautiful and heart breaking all at the same time.
ReplyDeleteI am a pediatrician who helps to take care of many children with SMA at the University of Wisconsin Madison (American Family Children's Hospital). I am privileged to have the opportunity to work with Dr. Mary Schroth who is world-renowned in her care of children with SMA. We have families come from near and far to have their children cared for by Dr. Schroth. I just wanted to pass this along as I learned about Avery through the Momastery blog and thought it may be helpful for you all to know that there is a lot that can be done for children with SMA Type I. We'd love to see you in Madison if it would be helpful :). God bless Avery and your family!
ReplyDeleteGO TO MADISON!!! Keep searching while you do the wonderful job of raising awareness. ...Support the tiny Mitochondria inside the cells that make up muscle mass w/ the cleanest purest, most natural forms of Oxygen, Water and Protein available. There must be some optimal formula. (If studies show how violence changes the DNA in children and shortens their lifespan, can't the reverse also true... extension of a lifespan based on factors other than genetics?) Consider other elements, (iodine, selenium and magnesium?) that your body needs to process oxygen, air and protein, and to rid the body of toxins. What is blocking the support of the muscle mass, what causes it to atrophy? ...Certainly, I am no docter! However, I have honestly met a few people diagnosed by doctors as terminal, after they have lived far beyond their life expectancy through a change in diet called "Macrobiotics," which they tried when there was no other hope. I pray that you keep searching and sharing your story. Thank you.
DeleteI just wanted to let you that i think you are an amazing little girl. I recently told my church about your story and we are all praying for you! Just remember that you are fearfully and wonderfully made in the image of God and He does not make mistakes! I fully believe in the power of prayer and I am praying for a long and happy life for you.
ReplyDeleteI just read the story about Avery on CNN and wanted to share that years ago, I was working at a school where a little girl with SMA was attending. She was in kindergarten. I am pretty sure she had SMA type 1 (could have been type 2, but I don't think so) because it was considered very miraculous that she had reached the age of 6. I don't want to be misleading-- she used a wheelchair and had a personal nurse to assist with her respirator-- but cognitively, she kept up with the other kindergarteners. I moved after her kindergarten year so I do not know how things progressed, but I did want to share with you, in hopes that it might serve as a bit of encouragement. Wishing you many years with Avery so that she can accomplish her bucket list...and so that scientists can have time to find a cure.
ReplyDeleteThinking about you and praying for you sweet little Avery all the way from Okinawa, Japan.
ReplyDeleteThank you for sharing.
ReplyDeleteLove it and I am with you Hubba hubba
ReplyDeleteThank you for sharing.
ReplyDeleteYou are an inspiration to us all!! Just one thing, would you please post and tell my friend that is an airbrush tattoo? She is very upset that someone would give a baby a real tattoo! I told her it's not real but she doesn't believe me.... I'm going to tell everyone I know about you, and your cause. I have four kids and did not know about sma.
ReplyDeleteI agree, say that it's an Airbrush tattoo, if it really is. I'm personally very dense about these things. I wouldn't mind if you say I lived in the boondocks or something for not getting it (I really didn't get it.) My parents were not as cool as Avery's and so my knowledge of tats (other than the fact that it's painful to get one even though it's "cool") is close to nil.
DeleteGood luck and God bless your family! I will be praying for you. You give "live life to the fullest" a new meaning. Stay strong! You can do it!
Thank you Avery for being so brave and sharing your story. I have a baby girl, Madelyn who is just a few months older than you. When she wakes up I am going to tell her all about you and when we say our prayers at night they will include you from now on. You are such a beautiful girl!
ReplyDeleteWOW Avery! I found you yesterday and have just fallen in love with you! I read all your posts yesterday and am just completely amazed at your life so far. You have done some really cool things!
ReplyDeleteI sure am looking forward to you checking more items off your bucket list. You have completely inspired me!
Hi, Avery! I LOVE your blog and am really enjoying all the wonderful stories of all the fun you are having. Gees, all those cute baseball players giving you "the eye"--wow! ;)
ReplyDeleteI am a blogger and have been so for 4 years now, may I make a suggestion? Please put a link in your sidebar to we can all read about SMA--the cause, the symptoms, the contacts for those who want to learn more, etc. I think that would be really helpful in your quest for getting more people to know about SMA.
Also, please add a "Follower" link so all of us friends can join your site and follow you on your adventures. I think your site will soon spread like wildfire in the blogging community and help your cause even more!
I wish you the very best of life, Avery! It's a good green earth with so much to see and enjoy. Don't forget to enjoy the little stuff too, like caterpillars, bullfrogs, and orange stripey kitties.
Hugs, new pally. :)
Is ti a real tattoo? Also, have you gotten your ears pierced? A girl should always rebel just a little get get something pierced. I did at your age. Of course mommy helped, me, but I'm sure it counted all the same. Also, if yo want to color your hair weird colors:
ReplyDeleteThe oil free pastel chalks color wet hair safely, looks like dye and washes out on the first shampoo. If you want something more permanent, try koolaid, but it always smells fruity and it takes forever to stain the hair. Also, you should got to a Ren Fair and a convention.
this may help in your teenage rebellion: http://www.bikerbabyclothes.com/catalog/
I followed a link to your blog through yahoo news. I thought I'd pass on a link to another family that blogs and has a daughter (Lucy) with SMA. Lucy is 3 and is the grand daughter of a lady I know here in Illinois. You can find their blog at: http://chadncherissefamily.blogspot.com/ if you're interested in connecting with another family affected by SMA. Lynne in Illinois
ReplyDeleteGreat pitch, Avery! Can't wait to read about your next adventure!
ReplyDeleteThis page is adorable ! i think all parents should do this for thier kids i love blogs..Ima remeber your daughter in my prayers never lose hope and the life of your duaughter and her time to go is not in the hands or knoweldge of the doctors how many times have they come out only to be wrong noone nknows when thier time is up.
ReplyDeleteMy daughter has SMA as well and I have meet many others with different types of SMA. Most type I's do live past 2 now because of all the research that has been done. Also, there is a real chance of a cure in her lifetime. SMA has been voted the disease closest to a cure. I think the bucket list is great, I really, really do. I know several type I's that are far beyond the age of 2. There is a lot that can be done. Dr. Schroth is amazing and so is Dr. Swaboda in SLC, UT. It is DEFIANTLY worth a visit and hope. Praying for a cure in 2012!
ReplyDeleteI just ran into your blog while looking up activities for my youth group. It touched me to read how strong you two have stood through this trial. God gives us only what we can handle and only what he knows can be used for the better. What you three are doing is an amazing thing.
ReplyDeleteI myself was born with a rare birth defect called mallux disease and it caused pain my entire childhood and finally attacked completely when I turned 17. I spent 4 or 5 weeks in St Joseph hospital in tampa fl losing 4 pints of blood a day while they franticlly searched for an answer. I'm 26 yrs old now and I teach youth with my wife about gods love for us and how he moves on every situation we go through.
Have faith and continue the great works.. we are all praying for you guys at our church. Ill be sure to add you on FB and spread the word
Hi Avery,
ReplyDeleteI just wanted to send you hugs & kisses from New Jersey. Your mommy and daddy are so lucky to have you. Next time you talk about your bucket list, tell them you want to have a half birthday party, it will be good practice for your first birthday. You can have everything you want at a half birthday party just the same as a first birthday party. As you know your half birthday is 05/12/12 which is coming up soon. So I want to be the first to say Happy Half Birthday Avery! Love, Jennifer
Your story made me cry so much. I wrote you on Facebook and Twitter, and am sending you something on Monday. I hope you like it and find comfort in it as much as I have found in them when I was a baby and toddler.
ReplyDeleteShare your inspirational story with us always!
Your humor is inspiring. My wife and I found out we carry a recessive gene that also has a 25% chance for our children to have WNT3A or tetra Amelia syndrome. Unlike SMA, our genetic syndrome has only a few recorded cases but it didn't make it any easier to hear that our son was "not compatible for life". All we heard was that we had better chances of being struck by lightening and they were amazed that we found each other and that he made it to 20 weeks in the womb. I have never talked about it in a public forum but it's inspiring to see how you've focused on Avery's life in such a great way. My wife and I are blessed to have our daughter who is 3 years old and absolutely brilliant and also to have "known" and loved our son ,baby James.
ReplyDeleteBeautiful post. Heard about your blog from cnn.com. Lovely lovely. Avery is beautiful.
ReplyDeleteHi Avery,
ReplyDeleteMy daughter Amilee was curious if you were still up for tasting a few sweet treats? She said if you can you have to try one of mommies homemade chocolate chip cookies, that is if you haven't had one already. She eats one almost every day and thinks that everyone else should too.
Sweet Precious Avery, You have such a beautiful smile! Your pictures make my heart melt, and bring a flood of tears to my eyes. God blessed you with amazing parents! I did not know about SMA until reading your story. I gave birth to my son on March 2nd. He was 6 weeks early, spent 3 weeks in the nicu. SMA testing was never discussed with me. Thank you for sharing your story. You will be in my prayers.
ReplyDeleteA few more suggestions baby avery for your list, get a hair cut
ReplyDeletecurl your hair
get into your moms purse when she's not looking and try on her lipstick/ makeup
take money from your dads wallet when he's not looking
go to the movies
ride in a convertible
ride a elephant
ride a camel
ride a horse
go on a plane
go on a train
ride on a boat
ride on a jet ski/sea do
take a swim lesson
go fishing with dad
enter a beauty patent
design a mom and daughter matching outfit
plant a garden using tulip bulbs and others
help water the garden....
Hi guys, I'm a photographer in New Orleans and am just now discovering Miss Avery and her awesomeness. I'd love to come do a family shoot for you as a gift if you don't already have a photographer you love. Feel free to google me and find my site, I don't want to link it here cause that's tacky. Bravo on making the best of an insanely difficult situation, I can see why God chose you for Avery's parents.
ReplyDeleteBon courage,
Olivia Grey Pritchard
Hi Avery,
ReplyDeleteMy name is Isabela, I'm 13 months. I live in Tennessee with my mommy an daddy. I got two older sister Nikki 23 (named after some rock star named Nikki Six never heard of him have you?) and Michelle she is 20, even though they don't live close to me I love them and miss them always. I will visit them in Oklahoma next week, Nikki has her graduation as well as Michelle finish her school too, I will tell them about my new friend Avery. My daddy saw your story in yahoo at work ( don't say nothing to his boss secret) and he told me about I, we have been following your adventures ever since. We are sad but at the same time happy and exited with all that you have done and how everyone is spreading the word on SMA. Now that I have either a baby brother or sister on the way I am reminding my mommy and daddy to ask to get the test done thanks to you.
I when to the mall to see if I could get you the best next thin to a real tattoo but I could not find one but then I saw you already got one, you go girlfriend. I see you got to hang around the baseball players hmmm they are really cute. Me, I love sports too, I was born a Tennessee Titans fan ( yeah baby, don't make fun of them they are good), baseball in AL Mariners all the way ( I think Ishiro is a hotty) and NL LA Dodgers ( Oh can stand the Yankees).
Other sudgestions for the list;
Start a comic book collection
Go to Comic Con dress up as a super hero ( I go as Harley Quein)
Go see the WWE live
This is a must you need to see all the Star Wars movies
My daddy mention to join the Army and get you Air Assault Wings and ride in a military car and maybe get on a helicopter. If you want to do this one my daddy said if you ever in the Fort Campbell and want to do this let him know in advance so he can talk to people and make it happen.
OK girlfrien its been past my bed time, take care, I love you.
Your friend
Isabela
I saw visiting Niagara Falls in on your list. Do it, it will change your life. I spend years living within walking distance of the park and went down several times a week just to stare at the rainbows.
ReplyDeleteI came across your blog through Yahoo! and I just want to say that you Avery, are a true inspiration. You are so blessed to have such wonderful parents!! To be honest, I'm not sure who is more blessed....you or your mommy and daddy! I have children myself and the doctor told me last week that I could not have any more and that has made me really sad. I should actually be happy to have MY children!!! Thank you for being such a brave little girl!!!
ReplyDeleteAvery, you are the sweetest. Your story is so moving and amazing. I've wrote an article about you on an Italian web magazine for which I write, that's all I can do right now but it's a way to share your story also in my country
ReplyDeleteStay strong - I wish you and your great parents all the best
Hi Avery,
ReplyDeleteI KNOW we will see you on Ellen soon. You'll melt her heart with your smile as you do your thousands (soon to be million?) followers. Hang in and be strong. Let your parents know that I was offered the SMA test when I was pregnant last year, but I didn't know what it was, so I didn't bother with it, so some doctors do proactively offer it (we're in Austin). My six month old daughter and I donated $250 toward SMA research in honor of you to MDA. We'll continue to follow you and look forward to years of your bucket list! Reading these comments and seeing the page views skyrocket, I know you've touched many lives and will continue to touch so many more. Have a great day!
OOOH! Your pink shoes are SO cute! Awesome pitch, my son pitched yesterday in his little league game and you both did great! I think the Skeeters won because you're their little good luck charm, that's why they all wanted to touch you for luck! Keep up the good work girl!!! xoxo your GA fans
ReplyDeleteWow! Avery you are a beautiful baby with a beautiful family. I too have a daughter with special needs, although. I understand that it is much different than having a terminal disease. I've spotlighted many kids with special needs on my blog--including kids with SMA. I too hope for a bright future and a good outcome for you. I do know that all life is precious. And you are living yours to the fullest! Good luck and much love.
ReplyDeleteDear Miss Avery,
ReplyDeleteHi, my name is Telisa. I myself was diagnosed with SMA shortly after I was born. My mom and dad were told when we found out that I wouldn't live past my second birthday either. Guess what... I proved EVERY doctor wrong and am still proving them wrong. It takes the support of a strong family and strong will to survive but I am now 29 years old and just crossed the final battle that every doctor told me I wouldn't be able to do and that is have a child of my own. Yes, my husband was screened to see if he was a carrier and luckily he wasn't. I hope and pray that you get to achieve every thing you put on your bucket list and more through a very long life. Stay strong and fight.
Yea Avery! You go girl! Every morning I wake up and get online and think "Time to check out what Miss Avery's been up to!" You make me smile!
ReplyDeleteWay to go Avery!!! God bless you and your family!!!
ReplyDeleteHello little friend! My family has been touched by muscular dystrophy - I have limb-girdle and my father has FHS. Throughout our experience, we have learned two things: patients can and do exceed doctors' predictions of survival rates, mobility, etc., all the time, and there seems to be little correlation between the state of the body and the happiness of the heart. At your young age I think you understand the latter very well already! Keep on shining, little star; there are so many people who love you!
ReplyDeleteI will pray for Avery and for you,as well.God can do ANYTHING,and if He chooses,will heal Avery completely.Either way,you will see her one day HEALTHY AND HAPPY! God keep you and bless you!
ReplyDeleteJudy
gosplgirlsreflections.blogspot.com
Hey Avery, I heard about you via Facebook. Your story,strength and attitude have really inspired me. This is the first I am hearing about SMA. I am praying for you, your family and the doctors. God works miracles. Enjoy your journey and thank you for sharing your story with us. I don't have kids yet, when I do I will tell them about your story.
ReplyDeleteJackie Dallas Tx
Bless you beautiful angel..
ReplyDeleteAvery your parents are awesome to allow you to live life!! I have been researching SMA for the past month because my daughter who is 17 months old has lost use of her legs and is starting to lose strength in her hands. I have wondered several day when we will get that phone call about our daughter having SMA. I am hoping/praying that it isn't what she has but I am making myself fully aware of what SMA is and trying to help spread the word about it. It is something that everyone should know about!!!! I hope you have a great adventure today and the days that follow. I will continue to keep up with you and hopefully my daughter can live as full of a life as you have had already!!
ReplyDeleteJust found this blog.. Hopefully your blog can help for SMA research..
ReplyDeleteI just wrote about this in my blog..
http://yourhealthblog.net/categories/avery-blog-by-a-baby-sticken-with-spinal-muscular-atrophy/
I just learned about you and your family through the article on cnn.com. Have you heard of Gwendolyn Strong (or her foundation)? Her family has compiled a huge amount of information about living with SMA. If not, check it out: http://thegsf.org/
ReplyDeleteMelissa
Dear Mike, Laura and Avery,
ReplyDeleteCame across your story from CNN. As a father and husband myself, I want to say thank you for the inspiration and for letting the world know how wonderful life is and that every second of it counts. I wish you all the best in everything. God bless you guys!
Mandy from Singapore
P.S. My child was also born on November 11 :)
If you haven't already you might consider contacting J. Robbins and his wife Janet. Their little boy Cal was born with SMA and got the same initial diagnosis. That was six years ago, and Cal and family are currently in England celebrating his Granny's birthday. You can read their blog at callumrobbins.blogspot.com. I wish you all the best.
ReplyDeleteHola, vivo en Santa Marta, Colombia, y estoy muy conmovida con la historia de Avery. Espero que Dios ponga sus manos sobre ella y le permita vivir mucho años. Una de las cosas que podría hacer Avery es jugar con la arena de la playa, es muy relajante y estimulante para un bebe y para ella sería genial. Un abrazo.
ReplyDelete----
Hello, I live in Santa Marta, Colombia, and I am very moved by the story of Avery. I hope God puts his hands on her and can live many years. One of the things that could make Avery is playing with the sand of the beach is very relaxing and stimulating for a baby and it would be great. A hug.
After I get over the sadness of the reason for this blog, I can only say one thing....BEAUTIFUL! You, as Avery's parents are such an inspiration. God Bless you all, and be strong little one. You have inspired many, many, many people!!!
ReplyDelete(And if you would like to add anything to your evergrowing list from Scranton PA, just let me know. (Just to fill the gap....Scranton is known as the 'Electric City', as it was the home of the first Electric street car in the US. Home of Steamtown USA, countries largest collection of railway steam engines. And home to Triple AAA baseball for the NY Yankees.)
Hi My name is Lauren. I also was born with sma. i know the struggles r hard. But keep ur heads up. What u both are doing for ur daughter is an Amazing thing. She is beautiful and a pure blessing!!!
ReplyDeleteDear Avery,
ReplyDeleteI came across your blog and I must say sweetie...u and ur family appreciate life like the way every one should...ROck on kiddo....
Take care
Manasa
I haven't read more than this one post, but I'm anxious to read about your faith in God. I think it must be there. Thank you for taking the time to share this information, and for bringing us along for the ride, full of humor, love and at the same time, sadness. ~Mindy
ReplyDeleteHello Avery and parents, I have a son with an undiagnosed medical condition that seems very similar to that of Avery's. I had looked into SMA in the past but for some reason it didn't seem to fit our son Logan. I saw Avery's blog on facebook and looked at the SMA site again and saw so many similiarities. We have tested him for metabolic and mitochondrial disorders and are going to see a genetics phsyician in a couple of weeks. I plan to bring up SMA to them at that time. Logan is 18 months old, has a GJ tube, unable to swallow properly, has reflux and many GI issues. He has a movement disorder of his arms and legs and has poor tone. I saw the before and after photos of her bedroom and smiled remembering our before and after too. Thank you for your blog and getting the word out. This is what parents need when they are searching for answers and you are doing so much for SMA and your beautiful daughter.
ReplyDeleteBest Regards,
Rachel Z
Go Avery great job. I am trully inspired and encouraged by your story. I am praying for you, your family and doctors. God works miracles and I believe He is working on your behalf. I am rooting for you.
ReplyDeleteGod loves you...if the doctors are saying 'no' God always says 'yes' Put your faith in God and Jesus, He can do miraculas things!
ReplyDeleteHi Avery! I found your link through cnn, and wanted to reach out to you and your awesome family. I am a pediatrics resident at a big children's hospital, and I fortunately know another very special little girl with SMA1. She's had a rough go in her very short life, and through the use of technology, she is now 2 years old, but is completely dependent on her tracheostomy and her home ventilator. She loves having her nails painted, HAS to have her lip gloss or chapstick on, loves blowing kisses, giving belly laughs and smiles. She, as I'm sure Avery is as well, is a VERY smart little girl who's unfortuantely had a very cruddy hand dealt to her. I encourage you and your family to continue what you're doing, take LOTS and LOTS of pictures and live every day to it's fullest! Keep reading to her, talking to her, and talking to her like she's any other little baby, because although her motor milestones will never be what they're supposed to be, I believe that cognitively, as long as we encourage it, she's still very much in there! I was shocked to hear my SMA friend utter bye and gave a little wave when I saw her int he clinic recently (it was a pretty neat trick she learned to say even with her trach!) Avery's life may or may not end up being shorter than we expect it or want it to be, but it's still her life, and she can, and should, live it to its fullest! I love what you're doing, and especially spreading the word about SMA. It's not all that common, fortunately, but when it hits, it's devastating. Avery, ask your parents for lots of big big hugs, and they can ask for one from you too! God bless, and keep kicking butt in reaching your bucket list, and having lots of smiles and laughs along the way! (shitake mushrooms... too funny!)
ReplyDeleteLindsay
Michigan
You are a beautiful little girl and you have such strong parents!! May God bless your family at this time. I've been bawling my eyes out reading this blog. I cannot even imagine and I admire everyone's strength. You are adorable and thank you for spreading the word.
ReplyDeleteHi there Canahuati family! We are the members of an endurance mountain bike race team called Bike Logan/Cure SMA. We actually leave in two days (May 1) for a one year adventure where we will dedicate ourselves to raising awareness about SMA. If you'd like to check out our website, you can find us at www.bikelogan.com. Maybe our paths will cross on our travels...
ReplyDeletehey avery! i just want to say, i think you're the best pitcher in the world!
ReplyDeleteBucketlist add: have Daddy win you a stuffed animal at an amusement park.
ReplyDeleteI am praying for you and your amazing mom and dad. And sharing your story. Thank you for the reminder of how precious life is.
We love you Avery! Continue to be strong and living life to the fullest. You have taught us all a lesson! When my mommy goes to her 6 week check up next week, she is going to tell her ob/gyn about you and sma!
ReplyDeleteWe love you Avery! Keep living life to the fullest! You have taught us all a very valuable lesson. You get to do the funnest stuff. You are my hero!
ReplyDeleteP.S. When my mommy goes to her 6 week postpartum check up next week, she is going to tell her ob/gyn about you and SMA
Love,Grady (5 1/2 weeks old)
My kids love to get ice cream from the ice cream truck. Avery will, too.
ReplyDeleteI was just reading the news via an app on my phone when I came across your story. With my three month old in my arm, I decided to look at your blog. I was sadden by what I read, and could not hold back tears for the adult you should be ab le to become, for your parents and family who hearts I know are heavy. I was upset that I had never heard of SMA, and never had the chance to get tested for it when I was getting tested for possible dieases and things with my little one. I loved to see how brave your parents are, and how beautiful you arefr just like your mother. I love that your dad shares your story and pics of your adventures on conquering your bucket list. I send you all my thoughts, prayers, and love. I will think of you each day I pick up my little one. I will visit your site daily to follow your story.
ReplyDeleteBest wishes and happy early mothers day to your mom.
Erica from michigan
Dear Avery ,
ReplyDeleteyou are in my heart and in my prayers .A big kiss to you
sweet baby , and to your fantatic parents .
A big hug from Italy
Marika Costantino
God bless you and your family. What an inspiration you are. You could've just kept little Avery a secret and never shared your struggles with the world, but instead you've chosen to share your story with us in a remarkable way. You're inspiring others with SMA, and even people like me who doesn't have the disease but is still moved by little Avery's life. Thank you. Avery's a blessed little girl and I know that she will be watching you from heaven one day and saying special prayers for mommy and daddy. Your love and work will not go in vain. ~Jeremiah 29:11
ReplyDelete~Lynda
Avery and family, I am a principal at a middle school in Bisbee, Arizona. We are a small school district where our leadership team works very closely together. I can help with one of your bucket list items. We are holding Promotion Ceremonies for our middle school and Graduation for our high school next month. We will pay for costs and make gladly give you an honorary certificate and diploma. My demographic are students who come from struggling families, they truly need your inspiration and your help as much as you need this bucket list item. I know the offers are pouring in, but if we can help mark this off and get you across our stage....we are more than in....contact me at mfranco@busd.k12.az.us. May is the month to do this bucket list item!!! You are a beautiful, amazing story...I am so touched and want to help....
ReplyDeleteMary Franco
What a fun day, Avery! You are a beauyiful baby girl. My son, Nicholas, will turn 4 next month and he also has SMA. We will be reading your story. Thank you for bringing some much needed awareness to SMA!! www.familywithgusto.blogspot.com
ReplyDeleteAvery, you have the most beautiful smile (: Thank you for sharing your story and spreading awareness about SMA. You are truly an inspiration!
ReplyDeleteHere are a few more suggestions for your Bucket List:
• Witness an eclipse
• Be a film extra
• Catch fireflies
• Go to a drive-in movie theatre
• Plant a tree
• Bake a cake
• Send a message in a bottle
• Walk the Red Carpet
• Ride in a Hot Air Balloon
• Break a Guinness World Record
• Make a scrap book
• Sleep in a Castle
Avery your a true inspiration to millions of people :) God blessed you with such awesome parents! My name is Makayla im almost 3 months old my mommy was reading that you might come to the San Diego zoo, if you do let us know I would love to meet you I live 3 he's away from the zoo. God bless you and your family
ReplyDeleteWow. Avery is an absolute blessing and inspiration, and I'm sure she isn't even aware. You two are wonderful parents and people. I may not know you personally, but you have really touched my heart. I thank you for sharing, and will pray for y'all and other SMA patients like Avery. May God continue to bless you.
ReplyDelete[Radio Interview Request]
ReplyDeleteDear Avery,
Please share your inspiring story with us!
My name is Heather Jung and I'm with a talkshow on radio called "1013 Main Street" on tbs eFM.
The program is hosted by Ahn Junghyun who was the former presenter for the Pyeongchang Olympic Bidding Committee. She was also the main host for the B20 Seoul Summit held last year.
We were wondering whether we might be able to interview on our program. We will be happy to have you talk in our show by phone interview.
If you are interested and have the time to speak with us, please let us know.
Your respectfully,
Heather Jung
mainstreet101.3@gmail.com
My name is Heather Jung and I'm with a talkshow on radio called "1013 Main Street" on tbs eFM.
ReplyDeleteThe program is hosted by Ahn Junghyun who was the former presenter for the Pyeongchang Olympic Bidding Committee. She was also the main host for the B20 Seoul Summit held last year.
We were wondering whether we might be able to interview.
We know that you are extremely busy, but we will be happy to have you talk in our show by phone interview.
If you are interested and have the time to speak with us, please let us know.
Your respectfully,
Heather Jung
mainstreet101.3@gmail.com
1013mainstreet@gmail.com
Oh Avery, you have stolen my heart, girl!! I thank God I found your site and am able to read about your very special life! You've inspired me and I know countless others in the very short time you've been telling your story! You're making a difference and I believe with all my heart you're saving more lives than you could ever imagine. To your Mommy and Daddy, how incredibly blessed you are to have been given sweet Avery. She chose you for a reason and the love you both have for her is beautiful. Thank you so so very much for sharing your sweet, wonderful girl with the world. I am honored to help pass her story along and will keep you three (and the rest of your precious family) in my prayers! Keep living life to the fullest, Miss Avery, you are rocking it!!!
ReplyDeleteAvery darling, you are so beautiful and wonderful and my family is so happy to have come across your site. We suggest adding to your bucket list:
ReplyDeleteRide in a police car
Ride on a Firetruck
Have a picture made with a police officer and a fireman
Ride in a NASCAR car ( your daddy might be all for that!!)
Keep writing us sweetie!! And I promise to harass Ellen on May 1st all day long!!!
Love,
Jen, Celina, Rebekah (14) and Gabriel (4)
Hi sweet Avery and Mom and Dad, I finally caught up on your blog. I've really been enjoying it. I'm so sorry for the evil SMA and the diagnosis. I hope you have an awesome life Avery, no matter how long it is. It sounds like your parents have a great attitude and a good sense of humor Avery. It sounds like they'll make lots of good memories. I don't think you could have better parents. I think a lot more pitchers would love to take naps like you did. I'll be praying for you. Maybe you could play with a cat one day. I have a cat you would like probably, but I live far away. Here are some ideas.
ReplyDelete1. Go to a concert.
2. Go sledding.
3. Wear jewlery
4. Make Mommy bed and breakfast and draw her a picture for Mother's Day.
5.Laugh
6. Have a slumber party
7. Dance
8. Sing
9. Go to a beach
10. See the ocean.
11. Be a big sister.
Best wishes to you and your family.
Hey there, my name is Caden Sager, 15 year old SMA type 2 patient. When I was in fifth grade I made some poems that reflected on my own hope. Hang in there.
ReplyDeleteI’m calling, hear me.
Catch me, I’m calling.
I’m falling.
Catch me, I’m calling.
You caught me. You heard me.
I wish I had a month for every weekend to play.
I wish I had a week for every day to work.
I wish I had a day for every hour to sleep.
I wish I had an hour for every minute to dream.
I wish I had a second for every school day to gain.
I wish I had a half a second free of pain.
I wish I had an eternity of wishes.
I wish I had a magic wand
to make all my wishes
come true.
My monster is different than yours…
the boogie man or creatures like that.
I have a different monster, and that’s a fact.
My monster has trapped me and many more…
he is a creature not found in lore.
He is neither man nor beast, but still he spreads evil and horror.
My monster takes me and shakes me…
he pushes me around.
He makes me look like a clown. There is no cure for him to be found.
My monster has odd friends…
Cancer and AIDs, all that cause pain.
They play their victims like pawns. Theirs is nothing more than a sad, sick game.
My monster wins many battles…
but war has been waged.
Strategies have been made, trials are engaged.
My monster doesn’t know…
it’s us he should fear.
Know this Monster SMA, our victory is near.
Day by day we live with hope
Day by day we get back up
Day by day we live the fight
Day by day and all through night.
Each
Snowflake
counts
as a hope for the cure
to come
When a snowstorm happens
hopes collide
in anticipation
of the wish
to come
true
What if I could cure SMA?
I might help the children walk today.
What if I could stop the wars?
I could spread peace and open doors.
What if I could do more?
I would help the needy and the poor.
What if?
Spirits moan and spirits groan, as the
curse of the disease takes its toll.
The spirits fight day and night
until the cure day comes…
until the cure day comes…
When shadows and light ignite
when the cure day comes…
when the cure day comes…
Hi cutie patootie!!! i just found your blog and i think your so cute!! i saw your bucket list and it said that you want to visit NYC. do you want to visit me? there are lots of people and places in nyc for you to see. yu would like times square! bye avery! :) have a happy day beautiful!!! and come visit me sometime, okay? i would love to see you!!! :) bye cutie!!
ReplyDeleteOh my, Avery is the most beautiful child! Thank you so much for inviting us into your world and for the awareness of SMA. I was an EMT in Houston in the late 90's, and having little ones in our ambulance troubled us the most and got the most prayers. Someone suggested her going to New York. If I can get your permission to use her photo, as I am traveling there in June, and would love to at least use a photo of her in front of all the landmarks, and I am going to a Yankee vs. Rays game, so she can be there. I hate posting my e-mail in comments, but it is swarren07@MSN.com (its a zero, not an o). I've been an EMT, have been in the Navy 12 years, and do what i can to help anyway I can. God bless the entire family and hope for a miracle for Little Miss Avery!!!
ReplyDeleteAvery you have brave beautiful parents doing an amazing job.
ReplyDeletewhat a brave soul you are, God is looking out for you little one.
xox
Dore
Hello! I am here to represent a business that is interested in helping Avery reach her donation goal toward SMA awareness by selling a bracelet specially made in her honor. We'd love to give her yet another special accomplishment to cross off her bucket list! Please visit our page to find out more about us at http://www.cathyscreationsjewelry.com! Also, view our cause jewelry, the line Avery's bracelet will be listed under, here: http://cathyscreationsjewelry.com/Cause-Jewelry_c3.htm. All proceeds from Avery's cause jewelry would be directly donated to SMA awareness in her name, per your wishes. Finally, here's a link to our Facebook: http://www.facebook.com/cathyscreationsjewelry. Please be in touch, we'd love to find out more about Avery and also be able to collaborate with you on this project for Avery! cathy@cathyscreationsjewelry.com
ReplyDeleteHi Avery, we just wanted to tell you we say a prayer for you and your amazing parents every night. Even Makenzie gives a kick in my tummy during prayer. We know your dad and what he is doing is absolutely amazing!! Hope to meet you soon!!
ReplyDeleteLove the Kiker Family,
Cole, Stephanie, Baby Makenzie and Zoe (puppy)
Dear Canahuati family,
ReplyDeleteI am so devastated to hear about the difficult ordeal little Avery has to go through. Thanks for sharing her story and shedding light onto the important cause of SMA detection. I had seen the blog a few days ago and was touched, then I was touched even more to hear that Avery was born the day before I got engaged and diagnosed the day before I got married. It is kind of crazy to think that between that time, a child's life could be changed in ways maybe even more significant than my own.
You all are in my thoughts.
How about creating a special website that makes it easy for you to fundraise and reach the goal of raising 1mil to fight SMA? I can help you get this going: http://nationbuilder.com -- please get in touch with me and we can chat to see how I can help. You can track it all and send it straight to FightSMA. Much love and light your way.
ReplyDeleteA few items to add to your list(if they're not already there):
ReplyDeleteHave a picnic with family and friends
Catch fireflies
Draw in the dark with a sparkler
Go for an evening walk just to enjoy the beauty of life and be sure to smell some flowers
Plant a tree in your favorite spot so you can always remember and go back every year to see how much it's grown
Dig a BIG hole in the backyard to see if you find something cool like dinosaur bones or the secret passage to China
Bury a time capsule with an important/meaningful item from each of your friends/family/SMAns who want to help.
Give your valedictorian speech at your graduation(have to dream big)
Become the first female president(again, dream big)
Avery,
ReplyDeleteI am so glad to see another brave face bringing SMA to the spotlight. My brother has SMA type 3. He is 18 but struggles everyday to do average things. My cousin also has SMA type 2. Our family is thinking of you. Thank you for your courage and strength. I am hopeful we will have a cure!
Dear Avery and parents,
ReplyDeleteMy son was diagnosed with SMA type 2 in February. It was a total shock. We already have a healthy daughter and were expecting our third (who is here now and negative for SMA). I am so sorry to hear your news. I love how positive your family is and your goal of raising awareness for SMA. I feel very hopeful that a cure will be found my son's lifetime for this disease. Here is a tiny bit of info regarding the amazing research going on.
Project Cure SMA has run 5 clinical trials with an overall investment by FSMA of $6 million to date.
http://www.fsma.org/Research/Clinical/ProjectCureSMA/
SMA is caused by a defect in the "Survival of Motor Neurons" (SMN1) gene. Researchers are hopeful to find a cure, because nature has provided humans with a second gene, almost a copy of the SMN1 gene. Normally, the second gene does not contribute much, but researchers think that its function can be increased by medications.
http://www.columbiasma.org/research.html
Currently, there are almost a dozen drug programs ongoing in SMA. They are at many different stages of development, from the earliest stages to more advanced stages.
http://www.fsma.org/Research/News/index.cfm?ID=6199&TYPE=1158.
I also thought it might be helpful to point out that SMA is s neurological disease, not muscular. Here is another link:
What is SMA?
Spinal muscular atrophy is a degenerative problem that affects the motor nerves, resulting in muscle wasting and weakness.
Spinal muscular atrophy occurs in approximately one in 6,000 -10,000 live births.
http://medicine.utah.edu/neurology/research/swoboda/sma/
There are millions of genetic diseases and testing that could theoretically be offered to every person wanting to have a family. But this is completely unrealistic and insanely expensive. And what do we then do with this information? It starts to become an ethics issues (anyone remember Gattaca?). A better way to use our time, money, and resources is to donate to research to find a treatment and ultimately a cure for this disease! It would be so awesome in your efforts to "go viral" if you could help spread the word about research and encourage donations in this respect.
Sending love, hope and encouragement,
Lynette
I have a suggestion for your awesome list
ReplyDelete1. Run through the sprinkler :)
Hello Avery,
ReplyDeleteJust checking up on you tonight. I think of you often and your parents. I did leave a msg for the Ellen show on fb for you. I think she's worthy enough to have you on her show. You might be even more popular than her :-) I thought of one more thing to add to your bucket list -- a Mani and a pedicure. You will be in my prayers tonight, sweet baby girl.
Avery and Family
ReplyDeleteI discovered your site a couple days ago and you haven't left my mind since. I have shared your site on facebook and by word of mouth. I have even been inspired to do more research on SMA. Thank you for sharing your story and raising awareness for SMA. I have bee trying to come up with a unique way to help you spread the word, I have one idea I'm playing around with, but in the meantime I wrote an article on my examiner.com site (Cleveland). If you wish you can find in by the title "What is SMA" I naturally put a link to your blog. Thanks you for sharing your story with the world.
Yes, please put a link on the sidebar about what SMA is so that people who come here can know instantly.
ReplyDeleteI loved reading through this and hope that you can educate a lot more people. I am attending UH and hope to go to their law school for Health Law. Virtually "unknown" diseases and dumb insurance practices (like not offering or not covering it) are things I want to change - starting with Houston.
Good luck - can't wait to read more.
Avery, you are such a beautiful soul! You and my daughter share a very special birthday! :) I am praying for a cure, and for all the happiness and joy that could possibly come to you and your mommy and daddy.
ReplyDeleteHi Avery, you are an amazing wee girl and you are so very lucky to have such inspiring and loving parents. I have just read your Blog and it was heart warming and made me smile boy you have covered a lot!!
ReplyDeleteTo your parents I send you my love and think you are true role models for other parents and families out there, what a fantastic and truly remarkable idea, such a respectful way to honour Avery.
I wish you all the best from Lisa-Marie Muir, in Dunedin, New Zealand
Olivia i was just about to comment that she should definitely add to her list a professional photo shoot.
ReplyDeleteSo glad somebody offered.
And Avery, i'm gonna send you a gift soon. I hope you'll enjoy it.
Cristina
sevgili avery, (dear avery)
ReplyDeleteblogunun gordugum anda sana hayran kaldım.. (i fell in love with you when i saw your blog..) Istanbuldan kucak dolusu sevgiler ve dualar seninle.. ( hugs of love and prays are with you from istanbul..) mucizelere inanmaktan asla vazgeçmeyin... (never give up believing the miracles) Allah her zaman yanında olsun inşallah.. ( Let god be with you averytime inşallah..)
This is just so beautiful!!
ReplyDeleteone of my best friends had a baby who passed away from SMA type one, and I did not know about SMA and the effects it has. This is such a great way to raise awareness!
Plus Avery you are such a gorgeous baby. :)
Thinking of your family.
All three of you are such an inspiration. I'm amazed at how positive and upbeat you all are, it's incredible. Avery is such a beautiful little girl. All the way from Australia, I salute and support you! I've donated $25.00 in your name to fight SMA. God bless you all. xxx
ReplyDeleteYou guys are a wonderful and beautiful family! I loved your blog Avery and cannot wait to read about all the wonderful things you are doing. What an inspiration you are!
ReplyDeleteHi Avery, you have made all the news here in Australia today and I have had a lovely time reading your blog. I am a mad sewer and would love to make you a girly dress....girls can never have too many dresses in their wardrobes. What size clothes does your mum buy you ? Would you like a matching bow for your beautiful hair as well ? Stay safe and love life
ReplyDeletehugs Carlie from Australia
Hey Avery,
ReplyDeleteI just found your blog through a news report. Its good to see you being a trooper through all this. I have traveled around a lot and From my trips I off you a few ideas.
1. Go to an Anime convention (This are cartoons that were created in Japan. A few that i liked are Bleach, Trinity Blood, and Inuyasha. Check your area to see when one is coming up in your area. Most the one I have been to are in the Ohio area but you can look them up and see if you want. the Ohio ones are: Colossalcon and Matsuricon.)
2. Visit the White House (Hey even you should get to see where the president live.)
3. Visit Lady Liberty.
4. Go to Japan and visit one of the Shinto Shrine (I have not gotten there yet but i have heard that they are really cool looking and you can make a wish :) )
Thia
Mike,
ReplyDeleteDad to Dad, my heart goes out to you. You are an incredible man and a reminder to parents everywhere that we can always make more money, but you can't recreate memories. Tonight my wife, children and I are going to read your blog together and come up with our own way to contribute to the cause for SMA as a family! Enjoy every second of every day and know how much your actions mean to so many!
Avery and family, Y'all are remarkable people. Especially you Miss Avery. I love reading your story with my little kangaroo (my 7 month old son) Harrison. I want to thank you and your wonderful mommy and daddy for sharing you SMA story.
ReplyDeleteGod bless and Love from West Virginia,
Brianna and Harrison
Hi Avery, I just read your blog today. You are such an inspiration to everyone. I lost my baby a year ago at 35weeks in my womb and never got the chance to do stuff with my little angel. You are lucky to have a chance to see and experience the world, so keep on smiling and keep inspiring people.
ReplyDeleteA POEM FOR YOU:
When Tomorrow Starts Without Me…
When tomorrow starts without me,
and I’m not there to see;
If the sun should rise and find your eyes,
all filled with tears for me;
I wish so much you wouldn’t cry,
the way you did today,
while thinking of the many things,
we didn’t get to say.
I know how much you love me,
as much as I love you,
and each time that you think of me,
I know you’ll miss me too;
But when tomorrow starts without me,
please try to understand,
that an Angel came and called my name,
and took me by the hand,
and said my place was ready,
in heaven far above,
and that I’d have to leave behind,
all those I dearly love.
But as I turned to walk away,
a tear fell from my eye,
for all life, I’d always thought,
I didn’t want to die.
I had so much to live for,
so much yet to do,
it seemed almost impossible,
that I was leaving you.
I thought of all the yesterdays,
the good ones and the bad,
I thought of all the love we shared,
and all the fun we had.
If I could relive yesterday,
just even for awhile,
I’d say goodbye and kiss you
and maybe see you smile.
But then I fully realized,
that this could never be,
for emptiness and memories,
would take the place of me.
And when I thought of worldly things,
I might miss come tomorrow,
I thought of you, and when I did,
my heart was filled with sorrow.
But when I walked through heaven’s gates,
I felt so much at home.
When God looked down and smiled at me,
from His great golden throne,
He said, “This is eternity,
and all I’ve promised you”.
Today for life on earth is past,
but here it starts anew.
I promise no tomorrow,
but today will always last,
and since each day’s the same day,
there’s no longing for the past.
But you have been so faithful,
so trusting and so true.
Though there were times you did some things,
you knew you shouldn’t do.
But you have been forgiven
and now at last you’re free.
So won’t you take my hand
and share my life with me?
So when tomorrow starts without me,
don’t think we’re far apart,
for every time you think of me,
I’m right here, in your heart.
Hey Avery,
ReplyDeleteI just seen your blog through a news report. Its good to see you being a trooper through all this. I have a couple things to add to your bucket list from my travels.
1. Visit the White House (Hey maybe you'll get to meet the President!)
2. Visit Lady Liberty (I'll let you in on a secret: She's really really nice.)
3. Go to an Anime Convention (Anime is actually Japanese style cartoons. They are actually pretty cool. Ill give you a couple to check out: Bleach (yes its named after the cleaner), Trininty Blood, and Inu-Yasha. Look and see what there is in your area, and I have a convention coming up in June that I am going to so if you want I can send you some picture to see what it is.)
4. Go to Japan and visit a Shinto Shrine (I have not gotten there yet, but from what I have heard, they are really neat and you can make a wish.)
Thia
Baby Avery-
ReplyDeleteI found your blog over the weekend and was truely touched. You are a fighter and your parents are so blessed to have had you. I have an 18 month old son and could never imagine being placed in this situation. Kisses and God Bless.
Alli
Hey,
ReplyDeleteI am 20 years old and from Australia and found this blog after looking at my internet news. I read the whole blog and numerous times cried my eyes out, you see, one of my close friends is 20 and has muscular dystrophy and I have seen the effects, but at the same time, I have seen how close it can bring people together. This is a perfect example of that and the reaction astounds me.
Avery is the most gorgeous little baby ever (and considering I have a 7 month old brother with down syndrome that is a generous statement. I will continue to follow this and think of her often. Sending love and prayers to all your family and friends. x
Oh my...words are not sufficient. I've always believed that everything happens for a reason; that God has a purpose for every person in his world. And while it may be heartbreaking at times to watch events unfold, your story shows us all how to make the most of them.
ReplyDeleteI am humbled. I have a very new appreciation for the pain in my life. Thank-you does not even begin to express how you have touched me.
I saw your story on FoxNews. Bless you for making the best of the situation. I pray for your strength and abundant blessings. This blog is touching, adorable, witty, and beautiful.
ReplyDeleteYou guys are all so awesome! What a great way to make a horrible situation beautiful and positive. This journey is a living testament to your beautiful daughter's life and give it a great purpose no matter how long or short it may be. God has a purpose for all of us here and your bright spirit is why he chose you to be Avery's parents. You have made her story now perhaps reach millions of people all of whom in some way have Avery in their thoughts, hearts in minds, even if it only a moment. I wish all of you the very best, strength, laughter, faith, joy and peace with your personal journey! *hugs* and *kisses* for your angelic Avery. God bless.
ReplyDeleteIam praying for her, have seen many healings in my day, God is still in the healing business,I Highly encourage you to read the book heaven is for real, a real eye opener and game changer, God Bless, Jym Tyo
ReplyDeleteDear Avery:
ReplyDeleteWhile the day here in South Carolina was a little dreary, you caused my morning to be full of sunshine! You are so very beautiful!
You, and your parents, are such a wonderful inspiration. I often forget that life is what you make it, and I can honestly say that knowing you will help me remember that on a daily basis. I do not have a little girl, but I do have a little boy that would have loved to have been your first kiss. If I did have a little girl, I think I would want her to be tough and be able to hold her on in any situation. Reading your story shows me that you meet this qualification to a tee!
A few things that you may want to add to your list include helping Dad pick out a present for Mom and helping Mom make a cake for Dad!
One thing you can cross off your list is being tough enough to make a mean old lawyer cry....
I am praying for you and your family, asking that God make each day special and full of all the blessings that you deserve.
Sincerely,
Adam Lee
Bravo to all those who are helping Avery accomplish her bucket list!! What an incredible gift to her...to her parents...to all those who know her...to all those who are inspired to step outside of themselves to help a stranger!
ReplyDeleteThere is no end to the tears I shed reading your story, as a parent I applaud your courage, I wish each one of you the very best in everything.
ReplyDeleteYou are beautiful Avery, and your parents are too!!!
ReplyDeleteDear Avery and Family,
ReplyDeleteYou are such a beautiful little girl! I will follow you on your journey with many many hopes for you and your mommy and daddy. I'm a mommy myself with a 2 year old daughter and two older stepchildren. Your parents are truly inspirational and have made me want to be a better mommy. I promise I will take more time with them, listen to them, and do good things for them.
Thank you Michael and Laura for opening my eyes during a time when I needed it the most.
Many blessings for Avery and your family,
Shan
So touched by your story. I had heard about you on local news (KHOU) when your story aired there and have since read every entry on your blog. I'm contributing a smile to your babycenter album in just a moment from my daughter Lexi. She's a little older than you (10 months old) but would love to be your friend!
ReplyDeleteLove seeing your story spread. I'm a mommy of 5 already so I won't be needing this screening myself but as a CF carrier, I know how easy testing can be. So, next time I see my OB/GYN, I'm going to see if she's offering this testing to patients who are planning to have babies! It's a small thing to do and could make such a difference! I'll pass your site on to her as well. I've already told as many of my coworkers and friends as I can!
Bravo to all those who are helping Avery with her bucket list. What an incredible give to Avery, to her parents and family, to those who know her, and to those who are inspired by her story. Blessings on all of you on your journey.
ReplyDeleteHi Avery (and Mommy and Daddy)
ReplyDeleteI came across your story and can only think of one word, albeit a long, over-hyphenated one... "AMAZING-AWESOME-INSPIRING-LOVING-FUN-PERFECT"! I must admit I am humbled by your parents' strength and courage... so much so I shared your story with coworkers and found you on Facebook, too, to share all your wonderful accomplishments and do my tiny part in helping to spread the word for you about SMA.
By the way... The Rangers play the Astros in mid June in Arlington and I noticed your Daddy wants to take you to an Astros game. Perhaps I can help with that... let me know. You can reply here if your Daddy and Mommy would like ... and I can get in touch with you thru Facebook.
Hi Avery, Mommy, & Daddy!
ReplyDeleteMy name is Katie Hock from Nashville, TN and I am so incredibly touched by your story! In 2006, the doctors were telling my parents that I would not make it through the night after I was involved in a near-fatal car accident. Not only did I make it through the night, but I defied the prognosis that I’d never use my legs again as well. Now I’m RUNNING around trying to touch the lives of people who touch my heart. And that, my dear child, is YOU!
I want to help you in any way possible…..but I will say that the one item on your Bucket List that caught my eye was “Have a father daughter dance while watching Father of The Bride”. I realize this is on your “I’ve got it covered” list, but I would love to help you out! I have pinpointed the perfect venue (it’s actually a historic movie theater in Nashville that has a dance floor and plenty of room for Avery’s supporters to come dance and watch the timeless movie) and I would be honored if you would join us for this fundraiser.
I am mailing you a letter with my contact information in it today (should be arriving in the next couple of days). I pray that you will give me a call and that you would consider joining us for this event (travel will be on us). This fundraiser will be held in Avery’s honor and all proceeds will be going to fightsma.
Blessings,
Katie Hock
I am so touched by your story, Sweet Avery, and by your bravery. I am completely amazed by the courage of your amazing parents. What a wonderfuly family you have! THANK YOU for educating me about SMA. Now that I know about it, I will pass along what I know to others. See what a wonderful thing you are doing?! Educating thousands and thousands of people every day and touching their lives in ways you can't even imagine! Please know that you are in our prayers every single day...and we are praying for your Mommy and Daddy to hold onto their courage and strength. We know they will, because you will help them to be strong.
ReplyDeleteThank you for touching our hearts and telling your story,
Paula and Michael Whisenant
and your newest friend, Drew, age 24 months
Avery, mom and dad...my brother shared your blogsite with me. What an incredible attitude and perspective you have! My niece was born last spring, and because of her physical condition, only lived 26 days. We struggled to understand why God would create her this way. We know and believe that He is soverign. Our sweet Maggie is whole and healthy and singing with Jesus now. Maggie, in 26 days, was a testimony of God's love, even if we don't understand it. I appreciate your positive attitude and your willingness to take it all by the horns. I plan to follow your blog and enjoy watching how God is using Avery for His glory. I'll also be praying for you and your family as I think of you. That God would be merciful to Avery, and that He will draw you to Himself if you don't know Him. If you do know Him, I pray that He will draw you even closer to Himself. God bless, Amy D. Dallas, TX
ReplyDeletep.s. I noticed that on your bucket list post, you need to cross out, "throw the first pitch at a baseball game"!
p.s.s. We're Packers fans too, and i've never been to Lambeau either. Hope you find a way to be a cheesehead, Avery!
Way to go my little friend, over 2M already. You are truly a hero, I am very proud of you and your mommy and daddy. I am sure you will have the longest bucket list ever, and know you will get to do every single one. With all that power you all 3 have, I have no doubt you will, even graduating from college and getting married as your daddy dreams!
ReplyDeleteKEPP IT UP MY LITTLE FRIEND, we will keep doing our part on spreading the ugly word SMA.
Hey beautiful princess :-)
ReplyDeleteYour blog was just posted on AOL and OMG it is sooooooooo inspiring.
My mascara is practically down to my chin, I cant stop myself... as I'm reading all the way from the beginning of your blog, tears coursing down my face, uncontrollably.
Avery, you're teaching a mighty lesson to the world. #1 its the awareness of SMA as well as #2 Gratitude and appreciation for life.
As we look around us, we should be ecstatic that we get to spend time with our loved ones and be so grateful for our precious children, parents, siblings and spouses. You're the luckiest little girl to have parents like yours. I'm sure they cherish every blessed moment they have with you.
We'll be thinking and praying for you.
Love,
P. Field
I was at the game and I was one of the many people cheering you on. Your story is so touching and you are amazing parents.
ReplyDeleteAmazing, 2 000 000 of page viewed, wowooooooo ! Are you imagnied that !! SMA got viral for real , yahoo !!!!! And you sweet Avery and parents too. Hope for a cure !!!
ReplyDeleteYAY!!!! I SAW YOU THIS MORNING ON FOX 8 NEWS CLEVELAND,OHIO THIS MORNING!!! AND I'VE BEEN SPREADING THE WORD ABOUT YOU ON FACEBOOK AND THROUGH EMAIL. ALL OUR THOUGHTS AND PRAYERS SWEET GIRL!
ReplyDeleteMr. & Mrs. Canahuatis,
ReplyDeleteMy name is Leslie and I was diagnosed with Type 3 SMA at the age of 3. I am now 41 and although my condition has gotten quite worse over the last 5 yrs. or so, I still live independently in my own apartment. I realize your daughter and I have a very different prognosis but I had a friend in college who had Werdning-Hoffman. Yes! She was in college! Her name was Nicole and she was an Art Major. Yes! AN ART MAJOR! She painted with her mouth and she dressed like a crunchy-granola hippy! She drove her wheelchair with the tips of her fingers and got herself around campus to her classes and activities and PARTIES just like everyone else! She always smiled and was a happy person. She even found a wonderful boyfriend! After she graduated I lost contact with her so I can't say if she is still with us today (some 20 yrs, later). But...my point is... doctors don't know everything. Avery may surprise everyone and see lots of those wonderful things you envision for her! Have hope for her! And for yourselves! Remember most of us are quite precocious children! We will keep you on your toes! Good luck to your family! You will be in my prayers!
Sincerely,
Leslie M.
What if I want to send you something that won't fit in a PO Box? I'm thinking with the help of mom and dad, you could put a push bike on your bucketlist. I realize your only 5 months but the sky's the limit little lady!!
ReplyDeletehttp://www.diapers.com/p/prince-lionheart-balance-bike-17993?site=CA&utm_source=cse&utm_medium=cpc_D&utm_term=TY-069&utm_campaign=Google&utm_content=pla&ci_sku=TY-069&ci_gpa=pla&ci_kw={keyword}
I read about your story with my husband and of course the first thing we thought of was if she was our little girl.
ReplyDeleteBut my husband did make a good suggestion for the bucket list after looking through your website:
Go to an amusement park and ride a roller coaster. Even if it's a "kiddy" ride.
I think every kid should be able to do that, who cares if it's the local place and not somewhere everyone in the world knows.
When the time comes it might be an option to have a tracheostomy placed and use a ventilator to maintain ventilation. Also there are cough assist machines and suction equipment available for use to maintain airways. Also having a G-tube/Mickey for tube feeding may be an option for nutrition. And for mobility it may be an option to get a rod placed in the spine and wear a brace to maintain an upright position to ride in a wheelchair while strapped in for support. Also a team of nursing/family care may be able to make functioning possible. I am aware of a 13 year old with this condition which has been capable of living a happy fulfilling life functioning effectively with the use of medical equipment and the help of an adoring team of family, friends and nurses. It may sound like an extensive amount of stuff to sustain life but if the possibility of the patient and family continuing to enjoy a fulfilling life together exists from my experience it is worth exploring all of the options that are available with the help of the patient's doctors and healthcare specialists.
ReplyDeleteHi! I have been so touched by your story. I had never heard of SMA until my daughter shared your blog with me. You are such a brave little person with an awesome family! I have somethings you need to add to your bucket list....be seranaded by some super mcdreamy guy, go to the prom, have a father-daughter dance. Love and kisses are sent your way.
ReplyDeleteLynn Presley
Dear Avery,
ReplyDeleteI have to write this for my Mommy, since she's crying reading your story. And hugging me tight and being all kinds of obnoxious. Man, these people are clingy.
I think I'm in love with you! You have such a beautiful smile...and man, who couldn't love a girl with that kind of pitch? Anyway, I'm pulling for ya girl.
Keep those parents of yours in line! If you give em an inch, they'll take a mile!
Love,
Roland
I made a $100 donation via www.fightsma.org
ReplyDeleteJust heard your story from the news,Avery. Thank you for sharing your story to all of us. What you make me believe is that life is really WONDERFUL! I like your lovely smile, and it makes me smiling till now:)
ReplyDeleteGod bless you!
Good wishes from Hong Kong :)
Hi sweet baby Avery! You have a new friend in Austin, TX. How lucky you are to have such sweet parents! I am excited to follow your journey and see all of the neat things you are getting to do!
ReplyDeleteAvery - you and your family are a true inspiration! You are all so very blessed and lucky to have one another. Thank you for sharing your story. You have touched so many people, me being one of them...you have changed my life hearing your story - Thank you! You are in my thoughts and prayers.
ReplyDeleteI'm a pediatric nurse at Nationwide Children's Hospital in Columbus, OH, and have cared for a handful of children with SMA. I came across your blog on a friend's facebook page and was reading through your posts when I saw you on TV on the local news! Anyway, I love the SMA kids! I remember the EYES of each SMA baby that I've met! They are so expressive and say so much! Thoughts and prayers are with you! Will continue to follow your story!
ReplyDeleteBaby Avery, you are so lucky to have the support system that you have; especially your mama n daddy. God works in mysterious ways but little Avery you are affecting so many lives and I'm sure will continue to affect many more until the end of the time. You will live on forever sweet angel. You are 2 months older than my baby boy, Anthony and he has informed me that he's really interested in older women. (uh oh) :) we live in deep South Texas and if you are ever up for a trip to the Beach (South Padre Island) we'd love to be your companions. Hugs and kisses precious.
ReplyDeleteLive on beautiful,
Crystal Villarreal
I just saw your story on the news and don't want this to sound wrong, but I was so excited. Our daughter Madison was diagnosed with SMA type 1 on February 7. She is 7 months old today. We have the same outlook as you on this. We want her to see everything she can and have the best life possible. She had to get a G-Tube on March 21 and has been growing like a weed since then. I am so thankful that there are others out there who are trying to get the word out about this. I'm sure you've found it, but I'd not, curesma.org is the most wonderful organization. They send you a welcome package with multiple toys and other things and also have carbeds that they send out for you to use as long as you need. The carbeds are fantastic because you no longer have to worry about there heads flopping in the carseat. I am so sorry for what you're going through, but it is nice to know that we're not alone :)
ReplyDeleteYour story is so unique - full of inspiration and action. We posted a link to Avery's blog and to the SMA website on our blog this morning. We hope this helps spread the word. http://permissionslips.wordpress.com/2012/04/30/making-your-bucket-list/
ReplyDeleteAvery,
ReplyDeleteYou are such an inspiration. As a mother reading your blog breaks my heart but I am so inspired and proud of how you are teaching everyone about this illness. I check your page daily to watch you cross more and more things off your bucket list. My prayers are with you and your family.
Love,
Clementine Diaz
I have taken care of a beautiful little boy that has SMA. The little guy I took care of is still with us today. He will be 5 yrs old in June. He has a special diet and lots of equipment. He has been involved with a study in Utah. His parents have been to Washington DC to fight for him (and his brother who has passed).
ReplyDeleteI would be happy to talk with you and connect you to his parents. Find me on FB as Kim Lawrence in Owensboro, KY.
I was able to get a Bill passed in the KY Senate to educate people about Spinal Muscular Atrophy. So, I am sending you prayers and hope for little Avery!
You are doing a beautiful job!
Sincerely,
Kim (SPCL RN)
How fun!!! Wish I was there to see your first pitch, but I live many miles away. :-(
ReplyDeleteI noticed that you have more than 2 million views on your blog. That's a very big number. Yay!!!
Have a great day, sweetie. xoxo
Rizza from MD
A very touching and emotional story. I will be sharing this on my blog and Facebook. Thoughts and prayers to you and your family.
ReplyDeleteAvery
ReplyDeleteSomething to add to your bucket list:
Come to San Francsico and go to the Basic Brown Bear Factory.
I would consider it an honor to add to your stuffed animal collection.
And please let your parents know that I think they are very amazing people. At times like this most parents would want to sheild themselves, and spend all the time they could just being with their child. But, your folks are out there trying to educate people. I think that's just amazing!
Beautiful Avery your smile is contagious. :) I just wanted to say hello from your friends here in Ontario Canada. I look forward to reading about what exciting adventures you go on. I have shared your story with my FB friends and have posted a link to your blog on Ellen's FB page.
ReplyDeleteLove
Trish Rushton
Ontario, Canada
Dear Avery...I have a blog too, and added your beautiful face (hope you don't mind) and a link back to your blog up on the very top of mine today. I hope to send lots more friends your way, each one interested in spreading the word about SMA. Love to you and your wonderful parents (especially dad for keeping up with a blog for you...boys don't particularly like writing), precious little one!
ReplyDeleteHaha, I love that mommy didn't know who the coach was. Avery, you have some wonderful parents.
ReplyDeleteHi beautiful girl! I'm sharing a link to your blog on my blog tomorrow (May 1) in hopes to spread your story and spread awareness. You are a beautiful, sweet little baby and I wish you love and happiness. http://amysreallife.wordpress.com
ReplyDeleteHello Avery! I just came across your blog after reading a news article online. It was on an Australian news site, so your story has travelled a long long way! Half way around the world! I will be bookmarking your blog, I will follow your journey, and I'm hoping that, even though I am so very far away, there is something I can do to help cross another thing off your bucket list. Such a pretty little girl, keep fighting!
ReplyDeleteHey baby girl,
ReplyDeleteI just started reading your story. I will most certainly pass it on. You are a very brave little girl. And I hope you are enjoying every minute god gives you here on earth. You deserve all the happiness in the world. Just fight for mommy and daddy, ok? They love you very much. And so do we. Hope to see more from you for a long time. I will check back tomorrow for an update :) youre book marked :)
Hi Avery, I am grandma to three beautiful little girls, who were not that long ago little wee girls like you! I have something to put on your bucket list, a sleepover at grandma's house. My your mom and dad could go out for supper and grandma and grandpa could have a very special night with you they would treasure forever.
ReplyDeleteG'day! Sarah from Australia here. Australia is a long way from where you live, on the other side of the world actually! Your story made it onto the online newspaper i read here in Oz and it has really touched my heart. I'm going through some struggles at the moment in my life and reading your story has made me realise i need to push past them and keep living as you and your mommy and daddy do. I'm so glad you have had the opportunity to meet you through your blog and learn about your story.
ReplyDeleteI do have a couple of things i think could be added to your list-
- Pat a Koala
- Jump with the Kangaroo's
- Hold a snake
It'd be great if one day you could do those things in Australia but if not there are some great zoo's in the USA, where you live, that have these animals and might be able to help you out!
I hope you don't mind i'm going to give you a mention in my blog during my next post!
I know i can't hug you in person but here is a cyber for you!
Hoo roo from Australia!
Praying for continued peace and comfort to Avery's family just knowing that God is in control. God bless, Lloyd
ReplyDeleteHi Avery! I'm Matthew. I'm 3 years old and was also born on November 11th (Veterans Day). I was diagnosed at 19 months with an extremely rare disorder which caused me to have seizures, one which lasted over 4 hours and nearly killed me. But I believe God let me live for a reason, and I believe He has big plans for you as well. I know I am a little older than you, but I would like to ask your father for permission to ask your hand in marriage, if you will have me. Please check yes [ ] or no [ ].
ReplyDeleteAfter reading you story and blog we held our daughter (7 months old) a bit more today. We made a donation to the FlightSMA website in your honor and will be spreading the word about SMA. Keep on living the most everyday. Thank you!
ReplyDeleteHello Avery Lynn! I just wanted to let you know that you make me smile! I read each of your posts, and I smiled every time I saw a picture of beautiful you. I think it's funny that you keep score - and it's even more funny that Daddy is always behind. :) I left you a bucket list item on Facebook, but I wanted to leave it here too. You must add "eat chocolate ice cream" to your list, if you haven't already! (And if you really want to live on the edge, make that chocolate ice cream, with Hershey's syrup squirted on top!) My Carleigh, who had Trisomy 18, never got to taste chocolate ice cream, and it's something that I highly regret.
ReplyDeleteYour friend,
Andrea
http://carleighangel.blogspot.com/
Dear Avery,
ReplyDeleteI lost a cousin 13 years ago to SMA. Our Allie-Belle went to Heaven 18 days before her first birthday, and like you, she fought hard to live while she was with us. She never lost her smile. Thanks for bringing more attention to SMA. You are an amazing little girl with an amazing family, and your actions will bring a cure that much closer. You're all in my thoughts and prayers.
As for your bucket list, I think you should ask your mommy and daddy to buy you a star and name it after you.
One of my family clients when I worked in early rehab, had a daughter diagnosed with SMA - at 2 parents realized she may live longer, so we got her into a power chair, at 5, they realized they could go to school... she's over 11 now, lives in her power wheelchair and has limited motion but is having a ball in life. Hope something like this happens for your little girl. If not, enjoy every day - she is!! It's tears and smiles time.
ReplyDeleteBeautiful! I am so glad I found this site. It inspires me to live my life to the fullest and never regret one moment! May God bless your family!
ReplyDeleteAngie
Canahuati's, I am impressed by courage! Thank you so much for being courageous and selfless enough to share your journey with us! I love you all and am praying for you! Jessica
ReplyDeleteDear Avery,
ReplyDeleteyou should bake something in an Easy Bake Oven. (Don't worry if you burn it, that's part of the fun.)
I had a friend growing up with SMA 1, she ended up crossing a lot of things off of her bucket list including living away from home, and getting an associates degree. Most importantly she inspired me throughout her almost 30 years with her come what may and love it attitude.
With 4 kids of my own now as I read your blog with smiles and tears, I have been reminded to pay more attention to the things in life that are really important. Your parents are simply amazing. Thank you. And may many blessings come your way!
Hi sweet Avery! Wow, you're living life to the top! You've done many things most of us would have liked to do in our lives! And your parents are so amazing to go on this great adventure with you!!
ReplyDeleteYou're a inspiration, and from now on, you'll always be in my prayers...
Sac, from Bogotá, Colombia
I seen your story on channel 19news and had to stop by and say something. My daughter has SMA type 1 and they told me she wouldnt live to see the age of two. She will be 11 next month! You have to have faith! I almost lost her when she was 2and a half but with her strength and Gods she is still here! She has trach but thats what helps her breathe today! I take her with me everywhere I go! Shes been driving a powerchair since she was 3! She is smart and amazing! Just keep believing and God bless all of you!
ReplyDeleteAvery, if you were in central Ohio, I would invite you to be in our upcoming dance recital. Since you are far from here, ask your mommy and daddy to contact a local dance school. I'll bet one near you would let you be a pretty princess ballerina in their recital. Every little girl should get to be a ballerina at least once.
ReplyDeleteWhat a beautiful way to celebrate your life. My heart is so full and I am crying as I type this. Your smile is infectious, Avery. You are beautiful and I love all your bucketl list ideas. You were blessed with wonderful parents. I can't wait to see more pictures and see what else you are able to cross off your list. You will be in my prayers.
ReplyDeleteBe in a parade.
ReplyDeleteHi Baby Avery! DJ Pauly D is appearing on Ellen tomorrow, so some of your friends & I have been asking him to give you a shout out while he's there. I hope we can help you accomplish your goal of being on the Ellen show! We also let her know about you on her "Inspirational People Page". Keep smiling & keep living baby girl. Xoxo
ReplyDeleteI don't even know you sweet Avery, but I love you! I love coming on here to read what you've done and seeing the pictures, you make me smile with your beautiful smile!!! :)
ReplyDeleteI have a 5 month old also. And a 3 year old and an almost 5 year old, all girls!!
I've shared your blog on my Facebook and I will continue to do that.
I'm always thinking of you and keep you and your family in my prayers!
Avery is so incredibly beautiful, and about the same age as my youngest, Mia. Your story is incredible and we will follow your journey all the way. Mia would like to send Avery some mail- so check your box next week beautiful girl! It's coming from Canada! :)
ReplyDeleteLove Avery's blog! Hoping to make her bucket list wishes come true! I was honored to submit a letter to Ellen today. I will pray that #1 on her list comes true! I am a nurse, and never knew anything about SMA prior to reading Avery's story. Thank you for sharing and for your mission of spreading awareness.
ReplyDeletePrayers,
Krista
what a beautiful child and family...praying for you!
ReplyDeleteAvery you have changed many lives and wanted to Thank you for spreading your message to the world..
ReplyDeleteI know you are in a place of wonderful things and people who will love you until the day you are with your mommy and daddy again.. You are very special.
Rest Peacefully knowing you have done what you came to do...
It will be the little things
ReplyDeletethat you will remember,
the quiet moments,
the smiles, the laughter.
And although it may seem
hard right now,
it will be the memories
of these little things
that help to push
away the pain
and bring the smiles
back again.
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
I'm so sorry for your loss family, Avery is in a better place that is free of the disease she and I share, SMA. We will all see here in Heaven someday. Rest in Peace Avery, you are such a brave little girl.
ReplyDeletewho gives a kid a tatto ? soo fucked up
ReplyDeleteMy deepest condolences to her parents and family
ReplyDeletethank you Avery for reminding me that there are more important things in life each and everyday than the ones I get stressed about.
may you little angel rest in peace
I'm so sorry for your loss. I loved reading the blogs about her developments. She was a fighter and a brave little girl.
ReplyDeleteThe night tonight will be a little darker in this world, and a little brighter in heaven as heaven just stole one of the biggest and shiniest star from here.
ReplyDeleteMy heart breaks for your family and for Avery. She was such a trooper and I love reading the blogs. She has touched so many lives in such a short time. That is a wonderful and miraculous achievement for even the tiniest of angels.
ReplyDeleteSo, so sorry to hear of Avery's passing....
ReplyDeleteYou are very strong parents, and I hope that her memory lives on.
Her story, through your blog, has inspired me to look at life differently. I thought our problems are major, but they do not compare.
As a parent, a father particularly, please share my deepest condolences. I will continue to pray for you and your family.
My heart breaks for your family, but you are in a better place. I pray for peace and comfort during this difficult time. I had the HONOR of seeing you throw the first pitch at the baseball game in Sugar Land. You are inspiring. God bless you all.
ReplyDeleteMy heart goes out to you both. While I may not know how exactly you feel as a parent who has lost a child I can empathize with you. I have enjoyed reading Avery's blog and have rooted for her this whole time. My condolences to you both and to your family.
ReplyDeleteI am so sorry for your lose! But for the short time Avery was here she has filled the world with love and did more than some that live to a old age. I'm not a religious person but know this you WILL see her again. All of my thoughts and prayers are with you! Sarah from Florida
ReplyDeleteHi Avery (though you're not here anymore)
ReplyDeleteI'm a university student on scholarship and it's really hard to keep my GPA high in order to keep my scholarship. I saw your blog though Yahoo! news the other day and I just loved reading it. Today I had a pretty tough paper and I came home and took a nap, waking up to news about your passing is really sad and now that I've come to think of it, I could have made you a hair band after my exams and mailed it all the way to America (I'm currently living in Asia)and (I love making pretty little things when I'm free, I made myself a hairband yesterday :))
Your parents really love you and we love you and your blog :) You've inspired to never lose hope (SMA did take away your smile) and to not let the difficulty of my studies take my smile away or stop me from trying hard and praying harder daily :).
Thank you so much for being a wealth of inspiration.
Love and Prayers
Precious
I am deeply sadden by your lost. I was aware of this devastating disease as a former co-worker of mine son has it. He started a nonprofit organization here in MS StopSMA.org and all the proceeds go to research for a cure as well. May God give you all continued strength.
ReplyDelete