tag:blogger.com,1999:blog-9188356437468688857.post3209411800181648040..comments2024-02-02T08:45:57.743-08:00Comments on Avery's Bucket List: NFD #1AveryCanhttp://www.blogger.com/profile/04114885815609492616noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-9188356437468688857.post-67659720579642435182012-05-03T21:17:10.856-07:002012-05-03T21:17:10.856-07:00My friend created this to help get Avery to gradua...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:<br />http://www.thepetitionsite.com/728/984/668/help-avery-get-her-college-degree/Kirstie Taylorhttps://www.blogger.com/profile/11102738399892410585noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-24995334062596763732012-04-30T18:55:57.243-07:002012-04-30T18:55:57.243-07:00Ride an escalator.
Have an online relationship. Y...Ride an escalator.<br /><br />Have an online relationship. You can cross that off, thanks to McSteamy!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-2057757454605178902012-04-30T09:10:38.149-07:002012-04-30T09:10:38.149-07:00Hi Avery! My name is Mason and I am 19 months old...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 jpollock6846@gmail.com. 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! ~MasonMason'sMomhttps://www.blogger.com/profile/16673449144957584900noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-61842869248482235252012-04-30T08:46:13.014-07:002012-04-30T08:46:13.014-07:00Avery,
I am moved beyond words. Your parents are t...Avery,<br />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! XOXOAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-23927344912761744492012-04-29T07:17:32.627-07:002012-04-29T07:17:32.627-07:00Hi Avery! I just read about you a few minutes ago ...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. <br /><br />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! <br /><br />Don't wait around- life is short! Give lots of love to your Mommy and Daddy :)<br /><br />All the best to you and yours,<br />- SentaSentahttps://www.blogger.com/profile/08327666380925810769noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-69144381985702098272012-04-28T23:00:39.455-07:002012-04-28T23:00:39.455-07:00Avery, you are such an amazing girl with wonderfu...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 :-)Marilyn Ashhttps://www.blogger.com/profile/12163666450812866311noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-21201940621897640752012-04-28T18:10:30.478-07:002012-04-28T18:10:30.478-07:00It breaks my heart to hear your story. I am a moth...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 PrayersBarbhttps://www.blogger.com/profile/05005466922172911793noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-70630410682509149242012-04-28T03:58:00.158-07:002012-04-28T03:58:00.158-07:00Ah! So glad you posted a picture of yourself in yo...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-907747749365389802012-04-27T20:21:19.327-07:002012-04-27T20:21:19.327-07:00The strength of your family is awe inspiring. I ha...The strength of your family is awe inspiring. I have an 8 month old and can't imagine losing him. God bless you.Conniehttps://www.blogger.com/profile/14638152385012913386noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-29641122364092621272012-04-18T19:33:19.432-07:002012-04-18T19:33:19.432-07:00Hello Avery, I' become you #1 Fan, I think. I ...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.<br />I just want to say I am sharing your story as much as I can, and I will keep doing it. <br />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.....<br />-Monica<br />Houston-TexasMonicahttps://www.blogger.com/profile/13898978278455992109noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-11094473723642234112012-04-18T09:49:33.807-07:002012-04-18T09:49:33.807-07:00HI Avery... I came across your blog today and I am...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.desmomhttps://www.blogger.com/profile/07177977010350691201noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-91304965779572437932012-04-17T17:37:50.666-07:002012-04-17T17:37:50.666-07:00Hi Avery ... You are such a precious little gift f...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<br />-James, Shannon, Justin and Jacob.<br />Houston TexasJames and Shannonhttps://www.blogger.com/profile/01602784719973556725noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-6389333701954853282012-04-17T07:16:39.210-07:002012-04-17T07:16:39.210-07:00Avery, My family owns a business called Faith Ridi...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!BrandiWright10https://www.blogger.com/profile/09136464447899713857noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-70271221508098311842012-04-16T21:42:34.864-07:002012-04-16T21:42:34.864-07:00Boo, your mom and dad were Amaze on the telly!!! K...Boo, your mom and dad were Amaze on the telly!!! Keeping your cute little behind in my prayers!!! :)Miss Meeshhttps://www.blogger.com/profile/09425960153661637101noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-38236183722495852792012-04-16T20:56:56.878-07:002012-04-16T20:56:56.878-07:00I have a four kids (Ages 9, 7, 4, 3.) My two young...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!Nancy Khttps://www.blogger.com/profile/00830554603146107088noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-32041351078242341022012-04-16T20:24:46.997-07:002012-04-16T20:24:46.997-07:00I've never heard of SMA before I saw your stor...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!!Grandma Tinkhttps://www.blogger.com/profile/17377484404565022064noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-12364372771590161372012-04-16T20:24:11.566-07:002012-04-16T20:24:11.566-07:00Never been so moved, tears fall down my face, as I...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!!!donna cookhttps://www.blogger.com/profile/12511880521355725476noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-2100510343616453312012-04-16T19:57:43.825-07:002012-04-16T19:57:43.825-07:00Hi ur little angle is sooooooo cute ur family is i...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!!!!!!!!Theresa francehttps://www.blogger.com/profile/10271493955655009063noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-3014560021731221412012-04-16T19:34:54.918-07:002012-04-16T19:34:54.918-07:00Hi again avery we saw you on tv you looked so beau...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 :)kg09https://www.blogger.com/profile/10903967476876571923noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-76768109369499400642012-04-16T19:22:53.727-07:002012-04-16T19:22:53.727-07:00Hey beautiful girl! You don't know me, I'm...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!lovelydihttps://www.blogger.com/profile/04672518986008211206noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-9518868002295126942012-04-16T17:53:40.570-07:002012-04-16T17:53:40.570-07:00Avery-you have already learned more than what many...Avery-you have already learned more than what many adults learn in their lifetime and some, unfortunately, never learn...you 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. <3Holly Welker and familyhttps://www.blogger.com/profile/06571399317826115004noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-60610558507458670422012-04-16T15:42:53.507-07:002012-04-16T15:42:53.507-07:00Sorry we couldn't upload the picture directly ...Sorry we couldn't upload the picture directly on the page:(kg09https://www.blogger.com/profile/10903967476876571923noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-67329040884409342842012-04-16T15:40:17.208-07:002012-04-16T15:40:17.208-07:00Hello my name is kasandra garza from houston tx.I ...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 daily.no 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 @ kasandragarza09@gmail.com 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! http://s1096.photobucket.com/albums/g328/kasandragarza09/?action=view&current=IMG_20120416_164115.jpgkg09https://www.blogger.com/profile/10903967476876571923noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-51088024115675775332012-04-16T15:29:23.047-07:002012-04-16T15:29:23.047-07:00This comment has been removed by the author.kg09https://www.blogger.com/profile/10903967476876571923noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-71462350552973889742012-04-16T12:44:27.345-07:002012-04-16T12:44:27.345-07:00Avery, you are such a beautiful miracle! May God ...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.<br /><br />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 cupcakedreaming@gmail.com and we can choose a fun theme for you!Tiffanyhttps://www.blogger.com/profile/08080835216078293284noreply@blogger.com