Saturday, April 14, 2012

NFD #1

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.

So yesterday is what I like to call an NFD, which means a No Fun Day.  I learned to call day's like yesterday NFD's instead of anything else because when leaving the hospital yesterday I said "Today sucked!  Sucked, sucked, sucked!" and my daddy immediately told me to not use bad words and that I was grounded, grounded, grounded.  Apparently my definition of grounded and daddy's are toooooooootally different because  he became even more mad at me when I thanked him for telling me I'm mentally & emotionally stable; admirably sensible, realistic, and unpretentious.  He responded, "Don't you get smart with me young lady, you know exactly what I mean." ...My response to him, "Yes sir.", but under my breath I was saying "whatever that means."

Before I tell you about my day I want to remind you that I'm sharing my story in an effort to raise awareness about SMA, teach prospective parents about SMA blood testing they can ask for prior to conception and what their options are if their future children are at risk of SMA.  But overall, in my life as well as in my death, I want to make a difference in the lives of others.  So please share my life story with everyone you know and have them do the same.

This was my yesterday... 

Before we left for a fun filled day at the hospital, my mommy & daddy let me watch my favorite show.  If I can see her, can she see me?  Peek-a-boo!  Peek-a-boo!

After my show was over, mommy put me in my bobsled that my main squeeze Cooper McDreamy gave me...uhhhh such a heartthrob...and then me, mommy, daddy, G-Pa, and Nana Sandi all went to meet my new doctors.

"They see me rollin, they hatin, Patrolling tryin to catch me ridin dirty."

When we got to the hospital we were running just a little bit late so daddy scooped me up and carried me to my appointment.  While we were waiting for the elevators from the lobby to go to the 3rd floor, only to take another elevator to the next set of floors, daddy and I stopped to take a quick picture (he told me not to post this one because he looks goofy, but I think I look gooooood and besides this will teach him to learn the proper use of the word grounded).  Daddy also kept saying, "Navigating this hospital is pretty much identical to the cheat code for Contra on the Nintendo...up, up, down, down, left, right, left, right..." ...whatever that means.
While we were waiting in the waiting area, mommy & daddy showed me these really cool fish tank thingies.  While staring at the fake fish I thought of two things...1) why are there waiting rooms at doctors offices?  If I have a 6pm reservation at a restaurant, my table is usually ready when I get there...with that said, mommy & daddy didn't seem to mind and were quite impressed we only waited 10 or so minutes.  2) Am I just being impatient because I've been "ridin dirty" since I got in the car?  This diaper isn't going to change itself people!

If Cooper is my McDreamy, then Dr. Lotze is my McSteamy.  He is my new doctor and this was my first time meeting him, but he already knew me because somehow he'd already read about me on the internet.  So I guess you could kind of say our relationship started online.  Dr. McSteamy is an extremely smart doctor who likes reading, long walks on the beach, and is very compassionate, attentive to me and mommy & daddy's needs & feelings, and just an all around nice guy...oh and I may have a small crush on him.

Ohhhhh, Dr. McSteamy, I thought you'd never ask, but out of respect for your wife, I think you should go call her while I ask my mommy and daddy for permission.

Mooooooom?  Daaaaaaaaaaad?  Pleeeeeeeeeeeease?

Me & my friends on the inside, from left: Marcus,
Diane, Chanti, Dalia, Dr. Farber,
Dr. Lotze McSteamy & me, mommy & daddy
It wasn't all fun though.  In fact this part is kind of why I think yesterday was an NFD for me, mommy, daddy, G-Pa, and Nana Sandi.  I'm not sure I understood everything that was being talked about, but the doctors were asking mommy & daddy a lot of questions about me and whatever it was, it made mommy & daddy very sad.  I don't remember all of the questions, but they were something about if I am just laying there sleeping, what should the people coming to help me do?  Should they leave me alone?  Should they do everything they can to wake me up?  And by everything, I mean EVERYTHING from pumping my chest up and down and blowing air into my body, to shoving tubes down my throat, injecting needles into my body, and possibly opening up my chest to help me wake up.  But if they have to go that extreme I would most likely only be able to stay awake with the help of some machine.  Seriously people?  Can't you just pinch me or pick me up? N-F-D.

Then they told mommy & daddy it's probably best I have something called a G-Tube put inside me.  I know G-Pa & gee whiz and I know inner-tube & YouTube, but what the heck is a G-Tube?  Why do I need one?  And why are mommy & daddy sad again?  Eventually mommy & daddy fought back the sadness and told me the following:

"Well scuttles, a Gastric Feeding Tube or G-Tube is a tube the doctors are going to put inside of you so mommy & daddy can put the right amount of nutrition into your body.  They are having to do this because drinking mommy's milk is already becoming more and more difficult for you, you've lost 9 ounces since you were last weighed, and in time the SMA will continue to make your ability to swallow even more difficult.  So we are taking the precautionary measures now instead of waiting until later, because Scuttlebutt without the G-Tube, you would become malnourished which would ultimately lead to many other potentially fatal problems."  NFD.  NFD.  NFD.

It wasn't all sad news though because my doctors did tell me my oxygen levels are stellar!  But with all the other news, the ride home really sucked for everyone...uh oh, oh no, oh no, pleeeeeeeease don't tell my daddy I just said that.

By the end of the day, I was just ready to go somewhere and be sad, but then look what was waiting for me outside my front door when I got home:
Thank you Roslyn in Nashville!

Thank you Angie, Trey, Georgia, Jack, & Elle in Houston
First my swing, now pink flowers :-)

Mmmmmmm cake ball!
You know what, after thinking about yesterday, I realize I was so busy harping on the few sad moments, that I completely forgot about all of the great moments I had throughout the day.  Am I the only person that 99 good things can happen to in a day and 1 bad thing happens and it makes me forget about the 99 good things?  Why is that?  Is it because the 1 bad thing is really that bad, that it far outweighs the 99 good things?  Or is it because I expect good things to happen each day so I take them for granted and don't cherish them when they do?

Items I Can Scratch Off My Bucket List:
1. Getting grounded
2. Teach my daddy the definition of grounded

3. Ignore my parents while watching TV
4. Meet my new medical team
5. Get proposed to by a doctor (you see it your way, I'll see it mine)
6. Find doctors who show emotion
7. Lick my first cake ball

8. Get a dozen pink roses in the mail

Up Next:
A quiet weekend with my family in preparation for my TV & radio debuts on Monday.  As I understand it, my mommy & daddy will be helping me tell my story to the following media outlets:

104 KRBE - Roula & Ryan Show (Monday, 8am)
FOX 26 News Houston (Monday, 9pm)
CBS 11 News Houston (Monday, 10pm)

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:

Fight SMA (

Cure SMA (

Sophia's Cure (

Thank you!


  1. you have to put "dance on the Ellen show" on your bucket list now!

  2. I love you guys......sending hugs and blessings xo

  3. My daughter Autumn has SMA type 2. She is SEVEN, uses a feeding tube, sleeps with a bipap. We also have a coughassist, stander, suction, leg braces, a back brace, power chair, manual chair, feeding seat,pulse ox, all sorts of feeding stuff, etc. This disease SUCKS. If you need help please email me There are also support groups on Facebook where you can connect with other families of babies with type 1. DON'T GIVE UP HOPE. Be proactive, there is so much you can do to make your daughter's life longer and better. Best wishes, much love from Michigan.

  4. Mike, you and your family are in my prayers. Just like everyone keeps saying, you and your wife are truly amazing parents and I pray for your continued strength. This blog is amazing and I look forward to watching you and Laura tell your story to even more people this coming week. Blessings, blessings, blessings!!!

  5. Sending love and prayers from Chicago. Have you checked out I believe Gwendolyn has Type 1 SMA as well.

  6. Hello!! What a precious little girl you have! I'm Sarah, mommy to Stella who is Type I SMA and just turned FIVE years last month. She was diagnosed at just a month of age at we were told by Mayo that she would live weeks or months because she was a more severe form of Type I. SO, you can imagine my excitement that I got to take her to kindergarten roundup yesterday!!! Have they talked to you about the bipap and cough assist? We did bipap for nights/naps for the first three years of Stella's life and would have continued but she had another condition in which her nose bled a lot so we ended up getting her a trach and wow, that sure didn't stop her!!! We used to draw the line at a trach but it has been great for Stella and am not sure why I thought it was such a horrible thing (I guess I envisioned a child having no quality of life or connected to a wall all the time. Stella operates a powerchair with just her fingers, goes to school, is out and about exploring the world, we have been to Florida each year over spring break, she went on a Make A Wish trip!!

    If you ever have ANY ?s, please let me know! I remember being in your shoes and worried about how long we had her. People ask me what her prognosis is NOW and I tell them, we have NO idea! She could outlive me for all I know! She is SUCH a blessing and I cannot imagine her any other way anymore. Love her SO much for who she is and what she brings out in others.

    Hugs from Iowa,
    Sarah, Proud mommy to Treyton (7 and SMA-free), Stella (SMA Type I and FIVE), and Sayer (3 and SMA-free)

  7. Avery, you are such a beautiful little lady! I know you make your mommy and daddy smile all the time.

    I don't like NFDs for you. :-( You deserve VFDs (Very Fun Days).

    You have a lot of people out here that have grown to love you since you started your blog. You and your parents are doing such a wonderful thing in educating all of us. Take care. And know that I send you a hug today for having to go through a day that sucked (don't tell your daddy I said that; I don't want that grounding thing, either!)

  8. Dear Avery, I really wish it was you writing this blog because I think you would tell a whole different story. I see it in your eyes and in your smile that you love life. There may not be a cure yet but there are treatments and protocols that can be followed to help you live and experience many and even all of the things on your bucket list if thats what you want. Just remember that quality of life is not measured by the places you get to go to, the # of toys, clothes, houses, cars, money, job that you have, whether you can walk, talk or eat, or by the # of days or years that you live. Quality of life can only be measured by you and despite having SMA your brain and mind are not affected by this disease. I wish you could meet my daughter Madison who has SMA type 1 and is 15 years old. She LOVES her life and she will tell you she doesn't want to die. There is HOPE and a MIRACLE right around the corner. The most promising research is in gene replacement therapy. This will eradicate SMA so please let everyone know about it and help bring it to clinical trial. Funding is needed NOW!

  9. Dear Avery, I just want you to know that your blog has reached Japan! I'm here living on a military base and heard about you though one of my online mommy groups. I have a little guy who is almost 7 months old and he thinks your just a beautiful little thing! If there is anything I can do to help you scratch something off your bucket list (send you presents or cool stuff from Japan) have your mommy or daddy email me at! you are strong beautiful little girl and I'm going to be spreading the SMA awareness!

  10. Thanks so much for sharing Avery with us all. She's such a beautiful little girl! When I read your entries, it does appear that she loves life and I appreciate and respect your hope while you also face the reality of this horrible disease. May God bless you all.

  11. Hi Avery!

    You don't know me, but my mom, Margaret Slutz, teaches with your mom and she says you have an amazing family! You also were so kind to donate some of your old clothes to our orphanage in Uganda this past Christmas, so I have wanted to tell you THANK YOU for quite some time!

    When I saw that you had The Ellen Show on your bucket list, I asked everyone I knew to write into the show in hopes that you can go on there and share your story! I hope that they get our letters and contact you soon! I don't think that she will be able to resist the video of you watching the show!

    I will be in Houston next month, and was hoping to be able to meet you! My boyfriend Joseph even offered to bring his motorcycle to help you check that off of your list! (Don't worry Mom and Dad.. He has a 50cc dirt bike that wouldn't be too scary!) I hope that I will get the pleasure of meeting you soon!

    Valerie Slutz

  12. This comment has been removed by the author.

    1. Dear Mike and Laura,

      I contacted some friends at the Museum of Fine Arts, Houston about Avery's "Bucket List." You can expect someone to contact you soon. I gave them Laura's email addresses (I did not give out your phone number). I hope that's ok. Perhaps, with the help of my museum friends, Avery will soon be able to meet an artist (there are many artists who actually work at the MFAH), take a private tour of priceless works of art, or paint a picture for you. You are in our prayers! Xoxox to your beautiful, precious Avery.

      Love, Carrie Robinson-Cannon
      713-447-6033 cell

      (Sorry, I removed and resubmitted this "comment" because wanted to include my contact information!)

  13. Avery,
    Can you send us a latest and greatest list, so we can help you cross items off? And keep us posted on all of your television appearances! I'd love to DVR them so I can see your beautiful face!I hope you got your mani & pedi done. :)
    Lots of love!

  14. Mom and Dad should contact tinysparrowfoundation and have your photo shoot done professionally. Your Mom and Dad take great pictures (don't get me wrong) but tinysparrow foundation could make a beautiful memory album of all 3 of you:-) God bless!

  15. Dear Cousin Avery,
    We love you and are sending our love all the way from New York. Wish we were closer but we are thinking about you EVERY day and love you to pieces.
    All our love,
    Stacy & Drew

  16. Avery, I'm in India on business (Yes, on the other side of the world) and came across your blog yesterday. I have to say, you have AMAZING parents! I now look forward to getting to my hotel after a long day at work so I can read about your day. I hope you have less NFDs and a lot more VFDs! Well, I would like to help add/remove items from your bucket list. While here, I have picked up a few items for you so we can add them to your list. I can't wait to get back home (San Antonio) and mail them to you. I hope you enjoy them & I can't wait to see pics of you wearing them.

    Lots of prayers, hope, love & hugs,
    Jessica Bolt & Family
    (Patrick-Daddy, Kiya Drew- 1yr old Daughter, Flea-Doggie & Nolie-Doggie)

    BTW-I'm sharing your story here in India, you're so popluar now!


  17. Many thoughts and prayers for you and your family! I'm not sure if this is on your list but every girl needs a James Avery charm bracelet. Ask your Mom and Dad about James Avery and they will know exactly what that is!! Enjoy making memories and then you can add charms to your bracelets of the fun things you've done!!

  18. I sent your information to my sweet friend, Christie Lacy. She is an amazing photographer.

    On another note, my girls are doing a lemonade stand for "Lemonade Day," and they thought that should definitely be on Avery's Bucket List. It will be Sunday, May 6 at Ace Hardware on 529/Barker Cypress. Please contact me at if you would like to join us.

  19. Hi, Avery! This is your cousin, Melissa! I read about your No Fun Day & I decided that I needed to get you something extra special........but, shhhhhhhhh, don't tell your Mommy & Daddy! We will sneak it into the house when they are not looking! Lol! Watch the YouTube video down below and you will see your surprise! I love you, honey, and I hope you have a super fun day today!! :)

  20. Hi Avery,
    I heard about you on the 104 KRBE - Roula & Ryan Show this morning. You are so beautiful, and you have such amazing parents. Thank you for your story. It moved me beyond words.

  21. I heard you on 104 KRBE with Roula and ryan this morning on the radio.My prayers are with you and Avery.She is precious!!I have 2 daughters and thank god everyday they are healthy.Your story really touched my heart as a mom.I can't imagine what yall are going through.I know god gave her to you because you are loving parents and will always make her happy and take care of her.God Bless.

  22. Dear dear Avery

    I heard about you today on 104.1 and posted your story all over my facebook page I cried at first because I remember getting tested for a different disorder called cystic fibrosis when I was pregnant with my little boy Logan. I can't say I know what your mommy and daddy are feeling because Logan was cf free... But I was very scared. I am sorry they are going through that. I can see in your eyes how much you love life and one at a time we are going to get your story out. Your going to be famous. If you ever want another Boy to kiss you, my little boy just learned how to give kisses and I promise he'd love to kiss a putty girl like you. I can't wait to read Bout you every day and hopefully one day I can help cross something off your list. I'm a single mommy working two jobs and school but I will do what I can to help you :) I hope you have a sfd soon.... SUPER FUN DAY

  23. Beautiful little princess, Avery:

    Her smile, tender & sweet, gracing us with warmth & strength. Her eyes, looking radiant & dear, windows opening, all is clear. She has such beauty for all to see, she's grabbing our hearts and souls for keeps. Without a thought, our love runs deep. We carry her with us, holding on tight, looking for that guiding light. We'll keep her with us, day & night, for in our blood, we walk as one. The power reaches out to us, bringing all of us strength & love.

    Avery sparkles with sweet brightness, just like a little star. Shining for the world to see, how we all do need to be.

    Avery, what a gift you are, our beautiful little baby doll! Love to you, and love to all! God Bless you precious! Gr.Aunt Karen

  24. Sweet Avery,
    My name is Stacy and I live in Oxford Alabama. A few of my friends and I would like to send you something and possibly try and help with your bucket list. Is there an address we can send things too?
    My email address is

    We love you!

  25. Avery, you are such a beautiful miracle! May God be with you and watch over you every second of the day. I can see what a gift you are to the entire world and especially to your loving family. My prayers and thoughts are with you.

    Also, I would love to create some party decorations for you so you can have an extra special next birthday. If you are interested, please contact me at and we can choose a fun theme for you!

  26. This comment has been removed by the author.

  27. Hello my name is kasandra garza from houston tx.I have 3 1/2 month old twins,eliasar and eliana.they were born premature at 32 weeks and spent one month in the nicu they were able to come home but on apnea monitors and must take caffiene matter what health issues they have faced we have made the best out of each situation and consider ourselves extremley blessed. Your story has touched us so much and we admire your strength and positive outlook on such an awful situation. We would really love to help you accomplish some items on your bucketlist. My twins would be honored to take you on a date (which could actually be considered a double date for you :)!) So I will let them ask... hi avery its eliasar and eliana would you be our first date?? We could go to the houston aquarium where we could see all the beautiful fishies and have lunch (but bring your own bottle please) and ride the carousel and maybe even the ferris wheel( have you seen that thing,it is gigantic) and hopefully if they are still around we could even take a horse drawn carriage ride around downtown ( my mommy and daddy did this on a date once).please email my mommy @ to let her know how this sounds. From eliasar: avery, I heard you like older boys but maybe I can show you us young boys can have fun too! Remember age ain't nothing but a number! Lol from eliana: ugh,please ignore my silly brother,I guess boys will be boys..but girls just want to have fun! My mommy got us dressed after our nap and we made this sign(with some help from my mom..ok she made it.)to ask you out right so here it is we hope to hear a response soon!

  28. Sorry we couldn't upload the picture directly on the page:(

  29. Avery-you have already learned more than what many adults learn in their lifetime and some, unfortunately, never should not have to endure NFD's BUT you have and you have learned to focus on the positive! If only all of us "adults" could do the same. You are AMAZING! You are my HERO! Please consider yourself hugged by me...I will keep you and your family in my thoughts and prayers. <3

  30. Hey beautiful girl! You don't know me, I'm a relative of a friend of a friend, but I'm pushing for you and going to try my hardest to make sure you get as many items off your list!

  31. Hi again avery we saw you on tv you looked so beautiful! We keeping asking are mommy "what'd she say,what'd she say?" And she says no word yet and to be patient so we will be here waiting :)

  32. Hi ur little angle is sooooooo cute ur family is in our prays. My son was born with epipeisy he was haveing 40 seizers a day doctor put him in acoma for a month when he woke up thay said if he dose have bain surgery he would be a vegtible by age 18 hes hes had the surgery 8 months ago is doing well. Keep praying god is good!!!!!!!!

  33. Never been so moved, tears fall down my face, as I lift my head high and clasp my hands in prayer!!! God Speed to your family!!!

  34. I've never heard of SMA before I saw your story on Channel 26 tonight. My older brother and sister had something that sounds very similar to what you are going through. James made it to 4 months and Diana made it to 7 months--but this was back in the 1950s when doctors didn't know much about genetics or how to treat something so serious. They called it "Amyotonia Congenita" which I think just means weakened muscles that you're born with. But all the symptoms of SMA seem the same, so I'm wondering if they just didn't know back then. Thank you for making me aware of this so I can pass this information on to my own children who are now married and wanting children!! This is wonderful that you are able to share this with the whole world!! May God bless each day and make each day filled with treasured memories for your whole family!!

  35. I have a four kids (Ages 9, 7, 4, 3.) My two youngest both have SMA type 2. I LOVE, LOVE, LOVE the way you write things! When my children were first diagnosed we met with another family that had children with SMA and they told me, "The good outweighs the bad." I'm learning what they meant. What a journey this will be. Avery is BEAUTIFUL!

  36. Boo, your mom and dad were Amaze on the telly!!! Keeping your cute little behind in my prayers!!! :)

  37. Avery, My family owns a business called Faith Ridin' Stables. We are located in Lake Livingston State Park. We heard about your story and would love to help you cross riding a horse off your list. We would be honored to have you and your family come ride with us. (936-967-5032) we also have ponies so you could ride them too! God Bless!

  38. Hi Avery ... You are such a precious little gift from God. I know you know that ... even the doctors want to marry you ( I will see it your way ; ) ... You have been blessed even though these are troubled times baby girl. My youngest was also blessed with a disease that alters his everyday life. God gives things to the ones that can handle it, and it just means you are needed with him in Heaven and you are here on earth to bless others and possibly help find a cure for what takes the lives of many children in this world. Tell us what you like in one of your blogs, I would love to send you some things to do in the hospital to help pass the time ... Besides Ellen and marrying your new found doctor, I don't think I can mail them : ) .... Love you baby girl, stay strong. You have captured the hearts of America and we will be watching and praying with you every step of the way. Prayers, Hugs and Kisses
    -James, Shannon, Justin and Jacob.
    Houston Texas

  39. HI Avery... I came across your blog today and I am so glad I did. You a very special angel. Dr. Lotze is my son's Elias doctor too...I am sure that you are in great hands :)I have never heard of SMA and I myself have a muscular diease. You have such stronger and loving parnets and I know that they love every moment that get to share with you. I will share your story with every person that I can, to make SMA known. You are such beautiful chld and your smile melts my heart. I will keep you and your family in my prayers.

  40. Hello Avery, I' become you #1 Fan, I think. I can't stop reading your wonderful blog. I keep coming back to see if you have anything new posted. I have to tell you, but don't say anything, that you have touch me deep in my soul. You are an amazing brave girl that is definitely doing something big. I am sure the world will hear about you and that horrible SMA will be known for sure. I also think you have the best mommy and daddy in the whole world. You keep telling us how proud they are about your beautiful smile, but what about theirs? I know you make them very proud and happy, but the strength and the happiness they transmit is out o this world. I have to say I feel honor to have met your daddy, and your mom seems to be as special as you two are. I really would love to meet you someday, and tell you in person how much I admire the 3 of you. I have 2 kids that could be really good friends of yours. I am sure you would laugh a lot with my little boy Andres, he is 5yrs old and he is pretty funny. My daughter Daniela will love to say hi to you upside-down, yes, just like that. She is always doing handstands and sometimes she drives me crazy. I see her feet more than her face. She does gymnastics and she would love to show you some cool things she can do, maybe you two could do a handstand together with daddy's help, that might be fun. They could also teach you some spanish, some words can sound very funny.
    I just want to say I am sharing your story as much as I can, and I will keep doing it.
    I want to thank you for such a hard work, such a big heart, and for inspire me and many people everyday. we'll keep in touch. Many hugs.....

  41. The strength of your family is awe inspiring. I have an 8 month old and can't imagine losing him. God bless you.

  42. Ah! So glad you posted a picture of yourself in your car bed! My mommy was worried about the weight of the buckle laying on the cumberbund right over my diaphragm, which already works so hard anyway. So we'll rig this like yours instead -- buckle down below! Of course, makes so much more sense, your parents are so much smarter than mine. ;) -- Cheers, from Elie, your one month younger, SMA friend in ATL.

  43. It breaks my heart to hear your story. I am a mother of 7... 3beautiful girl and 4 awesome boys. I could never imagin having to deal with this. MY prayers are with your family and Avery is Beautiful. God Bless you all. You will be in my Prayers

  44. Avery, you are such an amazing girl with wonderful parents. My heart aches for you. I am so sorry and saddened that our healthcare system has failed you. There should be testing for SMA, and I hope changes will be made in your honor - (the Avery test). I do have hope that your condition improves, and I will keep you in my prayers and on my Facebook page to spread the word. Hopefully, we can get you on the Ellen show! You are so lucky to have such wonderful and smart parents. They are quite clever to create this for you. They are also so lucky to have you bless their lives as I am also blessed for reading your story. Hugs and kisses to you and your parents. Love you :-)

  45. Hi Avery! I just read about you a few minutes ago and am so happy your parents are handling this crummy news in such a positive way.

    I lived in Houston/Sugar Land/Bellaire for 16 years and when my son was little (he's 19 now, and really cute!), his absolute FAVORITE thing to do there was go to the "dinosaur museum"- the Houston Museum of Natural Science! They have amazing displays and make sure you talk your parents into taking you into the tropical butterfly pyramid too. It's so beautiful- just like you!

    Don't wait around- life is short! Give lots of love to your Mommy and Daddy :)

    All the best to you and yours,
    - Senta

  46. Avery,
    I am moved beyond words. Your parents are truly amazing! Ali, Braylon and I are sending you love and best wishes from Cincinnati, Ohio. I will continue to read your blog and spread your story. On a side note, I know you have McSteamy, but Braylon is a 6month old boy that would love to meet you! XOXO

  47. Hi Avery! My name is Mason and I am 19 months old. My Mommy saw an article about you and has been keeping me up to date on how you are doing on your Bucket List! We live in Minnesota, and Mommy and Daddy says we would be happy to help you cross many more items off your list if we can. You can email Mommy at BTW...I think you are super cute and I am very jealous of Cooper and Dr. McSteamy! Let us know how we can help, and if you are ever in MN, look me up! ~Mason

  48. Ride an escalator.

    Have an online relationship. You can cross that off, thanks to McSteamy!

  49. My friend created this to help get Avery to graduate College! She is in talks with Houston Community College and the more people she has sign this petition the better.. We both love what you are doing for your daughter. You're amazing parents and are the perfect example of unconditional love! Here is the link: