Sunday, April 22, 2012

SMA Please Don't Take My Smiles Away

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.

One of the first things I remember my daddy saying when I was diagnosed with SMA was, "As long as it doesn't ever take her smile..."  Daddy's words made me realize that sometimes life moves so fast I forget the last time someone said something nice to me or even smiled at me.  As it turns out, I've been capturing people's smiles since before I was even born and I will continue capturing smiles and updating this section of my blog as often as possible.  So if for some reason you're ever having trouble capturing your own smiles, you can always borrow some of mine...









































































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 (www.fightsma.org)

Cure SMA (
www.curesma.org)

Sophia's Cure (www.sophiascure.org)


Thank you!

136 comments:

  1. Dearest Avery and crew, nothing will take away your smiles! EVER! You are touching so many lives by inspiring, motivating, and educating. I will continue spreading the word. Have a great week!

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  2. love this post. such beautiful smiles... i'm sitting here smiling right now because of it. oh, avery doll. you are so precious. you and your family are such an inspiration. thanks for helping me remember how to live :)

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  3. You have such a beautiful family and little Avery's smiles certainly are contagious :) Since I first found this blog about a week ago showed it to multiple new people each day, including on twitter, and I will continue to do so and hopefully that will help you spread the word about this terrible disease. My prayers are with you and your family.

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  4. Hi gorgeous Avery

    This is a timely post re: smiles. For the past 3 days another Mom and I (she and I don't even know each other!) have been on a mission to get you as many smiles as possible from other bubs. We have over 360 so far! I hope you, Mom and Dad have some time to take a peek. There are loads of guys there trying to catch your eye :-). Your Mom or Dad might need to sign up and then view the February 2012 birth group - but that'll be easy given they are Internet whizzes!
    Community.babycenter.com/post/a32814965/1000_smiles_for_avery

    Lots of love from brandnewbump and GinHK (our names on that group)

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  5. Hi Gorgeous Avery

    How timely! We thought you might like to see this :-) hope you get time to have a peek.

    community.babycenter.com/post/a32814965/1000_smiles_for_avery

    It's on the Feb 2012 birth forum.

    All for you baby girl, from a heap of people thinking of you daily :-))

    Xxxx

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  6. Adorable!!! Avery, I just love your smile! SO sweet!!!!

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  7. Sweet Baby Avery -

    Your smiles make me smile! Keep them sharing them with the world.

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  8. Lovely....what a beautiful family, bunch a beautiful smiles......you got one more here.

    Keep going little friend, you are teaching so many people your mommy and addy should be proud.

    XOXO

    Monica

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  9. Hi Beautiful girl

    What a wonderful Mummy and Daddy you have,you are all an inspiration to the world,Every day i log on and read your blog it makes me laugh and cry alot but i think what you and your mummy and daddy are doing is truly amazing
    I have two boys ages 1 and 5 and i have never heard of SMA before reading your story.
    keep smiling sweetheart
    Love and hugs from the BVI XOXOXO

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  10. love this post, keep on smiling precious baby girl and making everyone else smile too

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  11. the thought of "dont take my smile away" was what prompted me to post about you on my blog. If there is anything else I can do to help please please let me know. Till then I am following you and praying

    http://you-leave-me-breadless.blogspot.com/2012/04/perspective-blogging-for-averys-bucket.html

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  12. Avery,

    I haven't quit thinking about you since stumbling across your story yesterday on the November 2011 birth board on Baby Center.

    Your entire family is an inspirational group as all of you strive to educate others on this terrible disease.

    You are beautiful! Please know you and your family are in my thoughts.

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  13. Miss Avery thinking about you this morning we love you!
    Your SMA Friends Tonya & LeeAnna!

    ‎2 Corinthains 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness.

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  14. Baby Avery, I think about you often, and I pray for you every night. I do know that god does answer prayers, as I have been praying for a friend who was diagnosed w/ cancer and we found out 2day that all her tests came back and she is cancer free, not even one little sign of it. You are a beautiful little girl and you have such a wonderful family. I wish all the best for you and your family and I will continue to pray for all of you. Your parents are an inspiration to all of us.

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  15. God bless You beautiful baby girl

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  16. I believe that every child born comes into this life with a purpose- a lesson to teach the world. Angels come with the shortest time on Earth- theirs are gently powerful lessons!! YOU have been blessed with just such an Angel and look at how many lives she has touched and she isn't even done yet!!! <33 God Bless You All!!!

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  17. Wow, Avery - you are such a sweetie-pie and so clever, too! I will keep you and your parents in my thoughts and my heart. Very inspirational. I didn't know whether to laugh or cry when I started to read your website - so I did both!

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  18. PLEASE PLEASE PLEASE TRY THIS!!!!! A human being has a frequency of 66mhz. When the frequency lowers, by pollution, depression, negativity, we enter the frequency ranges of illness and dis-ease. A Rose has a frequency of 320mhz, 5x more then a human. By adding a high frequency to a low frequency, the low frequency actually raises. Please buy some Rose Oil, some pure all natural, it is expensive, buy Avery some Rose Oil, and massage it into her feet. The Rose Oil will begin repairing her DNA within 21 minutes. Now i am no doctor, but i have done my scientific and spiritual research and i am already in love with this child and want to see her survive this. Please, at least try the Rose Oil experiment. You have nothing to lose, and everything to gain. Buy Rose Oil and massage it into this girl's feet. Feeding her Blue-Green Algae might also help. Consciousness controls DNA, and consciousness is thoughts and feelings. Everything is made of light and darkness. Avery is losing light i believe, and needs light added into her. Please please try the Rose Oil. The say frequencies of plants are so high, that bacteria and virus can't even exist. Please, this could change the world. Love You.

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  19. You have to believe, even if you lose, at least you tried. And nothing dies, it's energy only changes. Change her energy now and brighten the light within her. Everything is made of light and darkness. Light is electric and sends out from within. Darkness pulls towards itself. Neither is good or bad, they are one and the same. I believe Avery has a darkness build up somehow, which is causing her to degrade in a sense, but all you need to do is put more light into her. Your only option is probably Rose Oil, and Positive Energy Environments. I've already posted a thing on Rose Oil, but please do this, for the sake of your child. At least read articles on Rose Oil, specifically Rose Otto, and Frequencies. A rose is five times more powerful then men in frequency and by adding it to her blood stream it'll repair her DNA. I PRAY TO GOD YOU TRY THIS AND IT WORKS. The world is corrupt and simple, it's time people thought and felt the truth. Save this girl. I'm trying to be a writer and be rich so i can help humanity, and if i was i would be at your doorstep with a bottle of rose oil as i write this. Love is the highest vibration, and opens up our locked DNA Codes. LOVE!

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  20. You are beautiful and the best blessing your mommy and daddy could ever have. Hugs n kisses you sweet and brave angel!! All of you will be in my prayers.

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  21. This blog is absolutely amazing! Best of luck to your baby girl, and keep up with the posting!

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  22. She is so beautiful. God Bless you and Avery always.

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  23. Dear Avery,
    Even though you have been diagnosed with SMA, I just want you to know that you are a bright, beautiful baby girl with big, beautiful eyes and the cutest face! You and your family are in my prayers and thoughts everyday.

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  24. shes so beautiful God's wonderful child:)
    don't give up hope
    my older sister got sick with medications and vaccines and the side effects all mixed together and ruined her nervous system, she was in chronic pain, couldn't get out of bed for months, she had to drop out of school most of her years in high school, she had lost everything friends and even control over her body, depression came over our family but God came through like crazy he healed her completely, we don't know how but he did it but he did come through. don't give up, just when our family was about to he came:)

    "i pray that God the source of hope will fill you completely with joy and peace because you trust in him, then you will overflow with confident hope through the power of the holy spirit."(Romans 15:13)

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  25. This is so inspiring and beautiful. It restores my faith in humanity in everyway. God Bless Avery! Can I ask how you found out Avery had SMA? I'm concerned that my son who is the same age 5 months, might have a milder case. We are taking him to see a specialist soon. Sending positive vibes and prayers your way.

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  26. Baby Avery, you have such a tragic but touching story. You are a beautiful little girl with two beautiful and loving parents. I hope that you enjoy your time on this Earth, we are blessed to have you here. I hope nothing but the best for you and hope that you enjoy crossing things off of your bucket list. Love and all the best.

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  27. Baby Avery, your story is both touching and tragically sad. Know that the world is sending you much love. You are a beautiful little girl with loving and beautiful parents. We are blessed to have you on this Earth while we have you, and I hope you enjoy crossing things off your bucket list. Sending love and peace your way ...

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  28. You will all be together again. There is no end. The Lord loves you and you are all his children! Remember that! :)

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  29. I was so sad to hear about your story.....Our community where I live in Louisiana also has a child that was diagnoised with the same disease. He was not suppose to live passed the age of 2, but with endless efforts by family and friends we happy to say JoJo is 10 years old now...some what of a miracle the doctors have told his mom and dad...His mom is a physical therapist and his dad is a respiratory therapist. They are always doing different kinds of therapy with him to keep well. I pray that your lil Avery can be blessed with the same blessing JoJo has been given to be strong and fight this disease as long as she can....God bless you and your family...

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  30. God gives us blessings and you never know how long the season may last but you are to appreciate each and every moment. You are truly blessed to have Miss Avery in your life for one minute of every day. The smile on her little tiny face just made me smile. The smile on your faces show so much love. I praise you for understanding that. Enjoy every day with her. Thank you for sharing your story. I will check in from time to time to see her bucket list accomplishments! Well done. My prayers to you and your family ... and of course to Avery for continued strength.

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  31. May God bless you every day Avery!!! You are an inspiration to your parents and thousands of others, keep smiling! You are a little angel and you have the power to teach so many, get up on your soap box as often as you can. Our prayers go out to you and your family.

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  32. God Bless you sweet Avery , I am praying that you are strong enough to prove the doctors wrong & beat SMA , with so much love & faith on your side I'm pulling for you sweetie.Tell mommy & daddy to take you to the zoo,all babies & kids should visit the zoo on their bucket list.

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  33. Please please please look at the Dr. Gerson diet. It has cured many people from what most doctors consider incurable/terminal cancer. You can get this book (http://www.amazon.com/The-Gerson-Therapy-Nutritional-Illnesses/dp/1575666286) and it can tell you exactly what to do. I learned about this when I saw the documentary "The Beautiful Truth". Please just at least look into it.

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  34. I'm not sure if St. Jude treats Avery's condition, but have you and your medical team looked into St. Jude Children's Research Hospital in Memphis? I just returned from there (my company is a corporate partner) and am happy to do ANYTHING I can to help. I have a 9 month old little girl and cannot imagine how you all are feeling. Your strength is an inspiration!
    Mollie

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  35. this is the saddest thing ever, it brings me to tears, God bless Avery and your family!

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  36. This is a beautiful blog. She knows she is loved. That's what counts. I will pray for you and your family. Stay strong!

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  37. I am praying for you guys, especially baby Avery. I know someone who is capable of doing miracles...His name is Jesus. You all are in my thoughts and prayers. Much love.

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  38. Thanks for sharing. I can't imagine what you are going through but have hope in God's origional purpose. We were created to live forever without sickness and death - in human form - on earth in paradise conditions.

    http://www.watchtower.org/e/20050501/article_01.htm
    http://www.watchtower.org/e/20050501/article_02.htm

    Take time to learn the truth when Avery's current journey ends. Take comfort that she will be back and you can be there to greet her!

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  39. HELLO. I AM FROM BANGKOK, THAILAND. I HAVE JUST READ YOUR STORY. ACTUALLY I AM CRYING RIGHT NOW. I AM TOUCHED WITH YOUR STORY. I HAVE A 1 YEAR OLD DAUGHTER TOO NAMED SKY. I WANT TO CRY THE HEARTACHES WITH YOU BUT I ALSO WANT YOU TO KNOW THAT YOUR POSITIVE OUTLOOK ON THIS INSPIRES ME. HOLD ON AND HOLD ON STRONG FOR AVERY. SHE'S A VERY CUTE LITTLE GIRL. GOD BLESS YOU.

    AIMEE HAZELLE SALADAR-BANGKOK, THAILAND

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  40. HEy guys give Maximizec Living a call!!!! They may able to help little Avery out!!!!!

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  41. Avery and your wonderful Mommy and Daddy - like everyone else, I happened to stumble upon your story on the internet. I am sooooo sad for you, yet I am so happy at the same time. You have lived more in your little lifetime than I have in my 42 years. Your Daddy is so awesome for creating this blog to tell your family story. How wonderful it is to read this and please know that you and your parents are so inspirational. I am going to do small "firsts" in your honor. My awesome daughter will be turning 20 next month and seeing your sweet pictures has brought back sweet memories of my little one when she was your age. I wish I could give you a kiss and hug and let you know how much you are in my prayers. You are such a cutie! Love, Melissa A.

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  42. Many prayers and much love are sent to you, Baby Avery and parents! The blog is a beautiful story and very inspiring. I hope Ellen sees this! The parents of Baby Avery have amazing conviction, strength, and love! Thank you for sharing this inspirational story and the life of your beautiful baby!

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  43. would this be of any use to you? http://uniteforthecure.com/sma-stem-cell-program. My heart goes out to you, my son had a rare, undiagnosed genetic disorder. He was sick his whole life, until last fall. I found out what he had, and he was offered a trip to NIH for treatment. Half an hour later, his drs came in and told us he had just 2 days to live,he had a rare form of cancer and his liver was failing. He was 25.

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  44. Avery, you are a special little girl with special parents. God has blessed your family and is using you for His glory. I just wanted you to know that. You will be in my prayers. I will also tell your story on my blog (hisheartandhome.com) and add a link to it. Jesus loves you!!!! Hugs and kisses! Mrs Jayne

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  45. I just came across your heartbreaking story and I just have to say that you are the most amazing people I have ever seen. I think Avery is just as lucky to have you both as parents as you both are to have her in your life.

    I think the blog and bucket list are just a wonderful idea and I have also reached out to Ellen Degeneres as I hope thousands of others do also. My heart and prayers goes out to you and your family, especially your beautiful little baby girl, Avery. I will also be following your blog to see what other items Avery can cross off her bucket list :) God Bless you All!

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  46. Avery, you're very lucky to have such amazing parents, family, friends and complete strangerswho love you. You're sweet little face and story has touched my heart. My son is 22 months and right before bed....he pointed to your picture and repeated after me, "pretty girl"

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  47. Avery, you're such a beautiful little girl. You're super lucky to have such wonderful parents.....and family, friends, and even strangers who all love you. Tonight during bedtime, I showed my 22 month old son Dominic a picture of you and he repeated after me, "pretty girl". One of his first two word sentences. Just thought it might make you smile knowing that an older boy from Vermont likes you : ) xoxo love dom

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  48. The Gods blessed you, Avery....with your Mommy and Daddy....and blessed them with YOU. My 18 month old daughter, Daphne is sleeping in the next room and it's all I can do not to go in and grab her up and just hug her. Love and Light to you and your family.

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  49. Avery i,m so sad there's no cure *cry cry*

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  50. Dear Baby Avery,

    Your smile is beaming with such joy! I hope you are enjoying life and I hope it's been an adventure that you'll never forget! I enjoyed reading your blog and have joined so I can get the latest updates with SMA and my favorite gal! You and I have a lot in common...especially about the older boys. LOL. I pray that God continues to let you live your life and keep the world up to date on SMA! You're an inspiration and reminder to the world to keep laughing, living and loving!

    Love ya Baby Girl!
    Ranesha

    To Laura and Michael,
    Thanks so much for providing the world with this site. It has been a pleasure seeing how you both interact with Avery and I love this being written in her perspective. God is with you in your every step and in Avery's milestones. You are both very strong people and have the world's attention right now. COntinue to use this blog as a way to keep your memories of Avery's big moments and as a way to reassure that you both made the right choice in developing the portal from your home to our hearts and the severity of this illness. I'm praying for your strength everyday.

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  51. At sunset, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them. Luke 4:40

    New International Version (NIV)
    Le pido a Dios que sane a su hermosa niña y continue dandoles fortaleza y Paz. Dios les Bendiga!!

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  52. Avery,
    Just curious if you have been shoe shopping and what your favorite pair of shoes are? Do you have a favorite color? I love the picture of you and mommy and daddy wearing silly bunny years. Your so silly. Have you ever seen a balloon. They are so much fun. My daughter Ava loves to play with balloons. She says that they look like a bubble. I bet you will be playing with bubbles soon. Have a great evening and make sure you get some good teeth in for mom and dad.

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  53. Avery,
    Just curious if you have been shoe shopping and what your favorite pair of shoes are? Do you have a favorite color? I love the picture of you and mommy and daddy wearing silly bunny years. Your so silly. Have you ever seen a balloon. They are so much fun. My daughter Ava loves to play with balloons. She says that they look like a bubble. I bet you will be playing with bubbles soon. Have a great evening and make sure you get some good teeth in for mom and dad.

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  54. Avery,
    Just curious if you have been shoe shopping and what your favorite pair of shoes are? Do you have a favorite color? I love the picture of you and mommy and daddy wearing silly bunny years. Your so silly. Have you ever seen a balloon. They are so much fun. My daughter Ava loves to play with balloons. She says that they look like a bubble. I bet you will be playing with bubbles soon. Have a great evening and make sure you get some good teeth in for mom and dad

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  55. I gotta tell you...what you guys are doing is inspiring. Avery is a beautiful little human being. I stumbled on to the article on yahoo and I will post on my facebook and email everyone that I know on how to find a cure for this disease. God bless your whole family and everything that you guys are doing.

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  56. My prayers and heart go out to your family. Praying the Lord's blessings are upon you as you treasure each special day with Avery and that God gives you the strength and peace you need to make it through each day.

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  57. Hello darling Avery. Thank you so much for sharing your story. You and your Mommy and Daddy are an inspiration to me. I will share your story with many many friends and hope to get the word about about SMA. You are so beautiful and adorable. As a Mom of two fun kids - 3 1/2 and 22 months I can tell you that they keep me on my toes. But, now that I have read your story I will make sure that I appreciate all of our moments together. Thank you for inspiring me to be a better working Mom. I am so thankful to have learned about your story and hope your story saves other children. Thank you for being the brave little girl you are and thank you for your strong and brave parents.

    Lower Manhattan, NYC

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  58. My sister and I want to help Avery cross "being a flower girl" off her bucket list. Please contact us. Avery is a sweet little girl, she is in our thoughts and prayers.

    Charlotte
    catgrl1972@gmail.com

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  59. Avery and family. I read your story and have fallen in love with your blog! I am a Mother first, but also a 3rd grade teacher. Starting next week my class will be participating in the "pay it forward" tribute to Avery. They will be collecting funds to send to Avery for her bucket list and will be sending letters to keep her entertained. They will speak to her on life as a "busy" 3rd grader ( and ALLLLL Ms. White's silly rules and yucky HW)!LOL. She can scratch that off her bucket list too!
    Keep Smiling!
    Kierra White and her 3rd grade class ( Atlanta Ga)

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  60. May God bless you and your parents, little Avery! I will be praying for
    all of you. I made a $25 donation this evening to FightSMA in your honor.

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  61. Hi Avery,
    I live in California and my name is Summer Rose Robinson. I'm almost 2 years old, my birthday is June 1st, and I just want to let you know that you like a lot of the same things that I like! I really hope that if I ever have to fight a battle like you have, that I'm as brave, sweet, and amazing as you are. I hope that my Mommy and Daddy would be as strong and as inspiring, too. Please know that you're truly blessed to have touched as many lives in your life as you have. I hope that I will one day be able to do the same. My Mommy had never heard of SMA nor was she offered a test for it. But now she knows and can spread the word. Well, it's my nigh-nigh time. I just wanted you to know that although we've never met face-to-face, I feel like my soul knows you and I already know I love you.
    Blessings you my little friend,
    Summer

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  62. Hello, my name is Jessica. I was born with the same disability your daughter has. Doctors from Children's Hospital of Los Angeles told my parents the same exact thing, that I was going to live eighteen months only. My parents were devastated. One year, two years, three years, passed and I was perfectly fine and healthy. Obviously the doctors were surprised when they saw me very healthy and very stable. Now I am seventeen years of age. Now I tell you Mike and Laura, only God is the one and only who has the last word. Every morning, when your daughter wakes up, give Glory to God and thank him for giving her another day to live and enjoy. May God bless this beautiful family and this beautiful baby girl. And remember that God has the last word for everything. Amen :)

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    1. You are a living testimony that God does answer prayers!! He IS the Great Physician, he IS the Great I AM and you are proof that nothing is impossible through him. Glory be to God!! I am standing on faith that God Bless and heal precious Avery the same as he did you... God Bless you Jessica always!

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  63. You are a lovely baby Miss Avery. Your parents seem pretty special too. Much love to you all. Love, the Palmer family of SV California xo

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  64. i will pray God , and u parents Pray , ask God what to do not doctors, God MADE HER !!! I'm sure God will help if u let Him do it
    my email: lorianas@mail.ru

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  65. Avert you are in my heart, so beutiful, I cannot stop thinking about. You have a boyfriend here his name is Noah he wad born 11.01.11. You and your family are in my prayers.

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  66. Greetings from Japan! Hello Avery and your loving parents. Your story is amazing. What you are going through is heartbreaking, but I know you are a gift. You are such an adorable girl. I wish I could hold you and see you. God bless you and the whole family. You're parents have been very strong and are doing amazing work. It is nice to have found you. You will always be remembered. Great blog, indeed. Inspiring!

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  67. DON'T YOU EVER GIVE UP HOPE. MIRACLES HAPPENS.
    mohamed NJ

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  68. May the Lord Bless" AVERY" and her parents..Please keep the faith the Lord is more powerful than any medication. I believe in miracles and I pray to God “Avery” will be a miracle child. May God Bless you and your little angel “Avery”……I will definitely keep your baby in my prayers.

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  69. Avery you are in my heart, and in my prayers. God is with you and your family.

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  70. You're gorgeous, though you haven't been her long you've made a bigger impact than me in my 30 years!!! Love and blessings to you and your family Sweetie:)!

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    1. :) I dido on that comment. She has made a tremedous impact on many in such a short time. KEEP FIGHTING HONEY!!!

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  71. Greetings from the Philippines Avery! I am very grateful to read your story... God hears a prayer of a pure heart. You will be healed in Jesus Name! God Bless you always

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  72. My prayers are with you. Your story is amazing, heart wrenching, and beautiful. Thank you for sharing your story with the world, you are an amazing little girl who has touched my heart in so many ways. I will never forget you and I will always remember your beautiful smile. Do not give up, stay strong, and lets fight this together. Much love to you and your family!!!!! Please keep me updated through my email stage_danzer@sbcglobal.net as I want to be with you every step of the way. Love Monica

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  73. Dear Avery,
    Your parents are amazing and boy do they love you! You are an incredibly special girl, blessed with parents who are turning something so profoundly sad into not only memories they will treasure forever, but into an opportunity to raise awareness of SMA in a way nothing else could. Clever people for sure. If you are looking for a prom date, our son, Ryan, is very mature (born 9/6/11) and would wear the best looking onesie tuxedo you've ever seen in whatever color you choose. Can't wait to see you on Ellen!

    Love,

    The Thompsons in Livermore, CA

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  74. Your family is amazing and Avery has officially been added to my list of young heros! I'm a pediatric nurse in Texas and have unfortunately seen SMA at its worst. Thank you so much for getting the word out about this disorder. It is such a mysterious disorder that must have more research! Avery, your blog is amazing and touching. You are an inspiration to so many and I hope that I will be given the opportunity to use my nursing knowledge and skills to increase awareness and understanding of SMA. You are beautiful, strong, and brave! God has an AMAZING purpose for you, princess! XoXo

    Ashley RN, MSN

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  75. My prayers are with you as I, too, know the heartbreaking experience of having a child with SMA. Our first daughter was born with this in August 1980. After months of hospital visits and countless tests, it was determined she had SMA a.k.a Werdnig-Hoffman disease. There was no prenatal test at that time. She lived to be nearly 10 months. Obviously, this was before the internet, blogs, Facebook. Not only are you making precious memories, but I am grateful you are getting the word out about this dreadful disease and the test available to determine it. Despite my baby's death, we did go on to have two more healthy baby girls and adopted a baby boy. However, if we had been armed with the knowledge that we were carriers of SMA, we and she could have been spared the months of fear and agony in getting a diagnosis. Avery is a blessing to you and many others. Love and enjoy her. All our days are numbered. God bless!

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  76. Dear Mom and Dad, your courage, strength and love for little Avery is amazing. I pray that the coming months, although difficult, will bring you peace and happiness.

    Dear Avery, please continue to share your bucket list and I look forward to seeing the Ellen visit ticked off!! Good luck!

    The Scott Family,
    Kuala Lumpur, Malaysia

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  77. Dear little Miss Avery,
    I stumbled across you blog, and I was sad to see that it had to end. I just wanted to keep reading. Your story brought me to tears not just because of your condition but because the unconditional love i can see that everyone around you feels for you. I'm a mommy just like your mommy and have never heard of SMA until now. You have to tell your mommy and daddy that everyone is behind them in getting the word out there and supporting them. I look forward to reading more from you spontaneous lil Avery and also looking forward to seeing you on Ellen(as i could see there is no better choice). All i can say is that we're praying for you and your mommy and daddy!! Keep up the fight.

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  78. Hello,
    My name is Joi Miles and I am from Las Vegas, NV. I read your story just a few moments ago for the first time on yahoo and something that was said prompted my spirit to reach out to you both. The bucket list was so cute to me; however there is one thing that stood out the most to me and that was the last item on the list......for Avery to get over her illness. After I read that, it was stated that the both of you knew that was never going to happen. That's where I come in. I am not quite sure what your faith is like or if you even believe in God, but I am here to tell you that HE is a GOD of ALL POWER. There is nothing that is so impossible that HE cant fix. Yes, the doctors say this and the doctors say that, but if you put your trust and faith in HIM, and pray and ask him to heal your child, then BELIEVE that HE will, HE can and will work wonders. Man has no say, HE has the final say. Don't give up or throw in the towel.....please. I have been praying for years for a baby, I am 38 and I finally got pregnant, only to find out that it was a blighted ovum. But I will still trust and believe that God will bless me to be pregnant again, this time with a successful pregnancy. I don't have any children, and when I look at your baby, I see a beautiful gift from the Lord. Pray for her, pray over her, and pray together and for each other. I will do the same.

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  79. What an amazing story Avery! Your story brought tears to my eyes. You have a wonderful, loving family and many friends. Keep fighting Avery!! My thoughts and prayers are with you and your family. Many Hugs and Kisses to you!!

    Love,
    Shel in Ohio

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  80. I have posted to as many celebs adn tv shows (including The ellen show )as i can for tonight , messaged and wrote on their walls as well as my own! :) been doing this for 5 hours now! Hope it helps and spreads the word. You are all in our prayers- God bless you all :)You have an amaingly strong daughter with a will to live! God can do miracles, he does evryday and you truly are one and perhaps God will heal you . I as are others are praying for it. -Bily C. Jones

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  81. I have wrote on fb walls and messaged all the celebs and tv shows I could think of. (Including the Ellen show!) Ive been doiong this about 5 hours, I truly hope it helps to get the word out about Avery and SMA!:) You are all so strong! You have an amazingky strong willed daughter and she is truly a miracle! God does miracles everyday and perhaps he will heal avery. I as well as others are praying for it:) God BLESS YOU ALL AND YOU ALL WILL BE IN OUR PRAYERS :)

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  82. I found this poem for a friend of mine who has a 7 yr old son who is dying from brain cancer. The doctors have given him less than 6 months to live. He too is working on his bucket list. I hope this poem helps you just a little bit, even for a short time.

    "WHEN GOD CALLS LITTLE CHILDREN"

    When God calls little children
    to dwell with him above,
    We mortals sometime question
    the wisdom of his love
    For no heartache compares with
    the death of one small child
    Who does so much to make our world,
    seem wonderful and mild
    Perhaps God tires of calling
    the aged to his fold,
    So He picks a rosebud,
    before he can grow old.
    God knows how much we need them,
    and so he takes but a few
    To make the land of Heaven
    more beautiful to view.
    Believing this is difficult still
    somehow we must try,
    The saddest word mankind knows will always be "Goodbye."
    So when a little child departs
    we who are left behind
    Must realize God loves children,
    Angels are hard to find.

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  83. Dear Avery,may you get well soon.Dont ever ever give up!May God bless you!

    Carissa,Malaysia

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  84. You inspire me in every way possible.

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  85. She is a beautiful baby! And your family has officially been named the bravest heros in my book! I have 2 daughters one is 6 years old and one is 8 months old and up until right now I had no idea what SMA was, no one, not even doctors have ever mentioned it to me. And as it turns out my grandmother had a son who died from it when he was a baby, which I also didn't know until now. I thank you for your blog Avery, it does bring tears to my eyes for 2 reasons... one because your so beautiful and so young and the other because your mommy and daddy want you to experience the world and everything in it. I don't know what else to say because I can literally fill a bucket right now. I hope that you get to see everything you deserve to my love.. the world is yours to conquer right now so go and get it!!!

    Many hugs and kisses and smiles and lots of love goes out to you from me, my husband Junior and from Emily and Izabella!!

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  86. hey Avery you are so beautiful.ur story made me cry but i know its not time to cry its time to celebrate a life. a life of a little gorgeous angel. thanx for letting us into ur life and informing us about the disorder. One thing you and your parents should know no doctor knows how much life God has bestowed in you and God is respector of no man or sickness i believe you will be healed and you will live to testify to the world what God will have done. il keep praying will you and your family.

    immar.kenya

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  87. PARENTS,Lay your hands on that baby any command that sickness to leave her body "IN THE NAME OF JESUS"!!! This doesn't have to be!!! Jesus was wounded for our transgression, bruised for our iniquities; The chastisement of our pease was upon HIM, and with HIS stripes we are healed. Don't just take what people says as final authority; respect it, but don't settle for that. GOD has last say in everything!!! Speak life over that baby. she shall live and not die and declare the works of the LORD!!!Amen. Let GOD be gloryfied in this through Jesus Christ!!!

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  88. Dear Avery,

    You Rock Baby Girl! What a blessing you are to each and every person whose life you touch! You have reminded me that life is what we choose to make it and that when we each reach the end of our journey here on earth, we should just check that off our bucket list... it is just the beginning of the next journey!!! God is truly AWESOME and I have seen him through you!

    Now, down to business... I am a lifetime Girl Scout and want you to be a Girl Scout too! (You are a natural Girl Scout because you are courageous and strong!!) I have contacted the top Girl Scout, Ms. Mary Vitek, CEO, of the Girl Scouts of San Jacinto Council and asked her to help us. She is "friendly and helpful" so I am certain we will hear back from her soon.

    Please add "Be a Girl Scout" to your bucket list cause we are gonna make that happen!

    Hugs & Kisses,
    Ms. Lori P (A.K.A. "Patches")
    Leader, Johnston County
    Girl Scouts North Carolina Coastal Pines Council

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  89. Dear Avery,

    You Rock Baby Girl! What a blessing you are to each and every person whose life you touch! You have reminded me that life is what we choose to make it and that when we each reach the end of our journey here on earth, we should just check that off our bucket list... it is just the beginning of the next journey!!! God is truly AWESOME and I have seen him through you!

    Now, down to business... I am a lifetime Girl Scout and want you to be a Girl Scout too! (You are a natural Girl Scout because you are courageous and strong!!) I have contacted the top Girl Scout, Ms. Mary Vitek, CEO, of the Girl Scouts of San Jacinto Council and asked her to help us. She is "friendly and helpful" so I am certain we will hear back from her soon.

    Please add "Be a Girl Scout" to your bucket list cause we are gonna make that happen!

    Hugs & Kisses,
    Ms. Lori P (A.K.A. "Patches")
    Leader, Johnston County
    Girl Scouts North Carolina Coastal Pines Council

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  90. Sweet Avery, Your story makes me happy and sad...You are so beautiful, full of life andthe most beautiful little smile! When its comes time for you to go be an angel in Heaven just know you will NEVER be forgotten! Please tell your strong, wonderful mommy and daddy to keep their heads up, were all praying for strength and peace for everyone! One last request...my sweet babygirl is a very special little Angel in Heaven, she was taken just a couple hours after she was born...look for her and I know she would be sooo happy to show you around. Lots of Thoughts and Prayers coming your way sweet baby girl!

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  91. You've got over 1,000,000 views now sweet baby! I am keeping your entire family in our prayers. You and your wonderful parents are truly an inspiration; you are teaching the world how to live life to the fullest no matter the prognosis.

    Love,

    Melanie Elmore from Tupelo, MS

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  92. every night i say my prayer and i ask God to keep my 8 months old baby and all the people i love,healthy.i promise to put Avery in my prayer.every night.

    with respect
    Evgenia,Greece

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  93. Amazing family!!!!!!!!! May God continue to bless you and that your message reach thousands in hope of a cure.

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  94. Dear Avery!~
    My name is Kenadee and I am 2 years old. I have severe mitochondrial disease. The doctors told me I don't have very long to live either and your blog inspired my mommy this morning. I have a blog already but my mommy is going to start me a bucket list right now. I am so glad that your mommy did this and that a friend of mine saw the blog! Thank you and good luck! Stay strong!

    Love, Kenadee Moore (kis4kenadee.blogspot.com)
    P.S. My mom is working on changing my blog..that's why it looks messy ;)

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  95. Avery, you're beautiful and charming...My family & I will pray for you. God Bless you & your family...

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  96. Avery-

    You are amazing and your family is awesome. I will always remember your story. Thank you for sharing. :)

    Love <3,

    Mandy

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  97. Avery,
    You are one beautiful little lady! Live sure is not fair, but rest assured that heaven will more than make up for the bad hand you have drawn here on Earth! You will definitely be the prettiest little angel in heaven! I will pray for you and your family, but in my heart, I know that God will carry all of you through! Enjoy your short life journey and remember that in heaven there is no SMA! My prayers!

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  98. I saw your story on MSNBC. What a tremendous thing you are doing, putting a face to this horrible disease. Thank you for opening my eyes to SMA, and know that my thought and prayers will be with you in the next few months and years. I have forwarded your story to family in Ukraine, so you can add another country to the list of many that are praying for your beautiful daughter. It never ceases to amaze me that sometimes the biggest ambassadors for weighty issues are the smallest members of our society. God has used you and your family for a wonderful purpose. Never stop believing in miracles. I was told I would spend my life in a wheel chair, and ended up dancing on stages throughout the US and Europe. God truly can do anything. Thank you so much for sharing it with the world!!!

    Katya Orohovsky
    Former Ballerina and Artistic Director of a small ballet company

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  99. I would love to help you.
    I do energy work. I had aplastic anemia and the traditional protocol did not work on me the only other option was clinical trials. Energy changed my life.
    All I would do is send love and meditate for your kid (long distance) I cannot promise it would work but I volunteer if you accept to try it.

    caminoalinterior@gmail.com
    Love
    El Bernie

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  100. I would love to help you.
    I do energy work. I was diagnosed with Severe aplastic anemia and the traditional protocols didn´t work. All was left was clinical trials. Since then we started learning about energy and that saved my life. I don´t know if it would work for this problem but I am volunteering to help.
    All I need is your permission to send love, talk to the energy and meditate for your kid. I´ll receive feedback from you of any positive changes is any and we continue the process.
    Sending love.
    El Bernie, contact me at caminoalinterior@gmail.com I have a blog in spanish in case you are interested (caminoalinterior.wordpress.com in which I share what I have learned. Maybe it helps)

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  101. Dear Avery,

    Thank you so much for sharing your life with the world! It is beautiful, and you have truly amazing and admirable parents. I was shocked to see that, after I voted, 88% of people who visited your site didn't know about SMA prior to hearing about you, little girl. Please let your mommy and daddy know that I will be checked to see if I am a carrier when I am ready to have a little boy or girl, and--all things willing--I hope my child is just as adventurous as you!

    You and your parents are truly making a difference all across the globe. Please cherish that. Bless all of you.

    Here's to living longer than any doctor imagined!

    Bethany
    Wilmington, NC

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  102. Hi Michael,

    In 1985, when my son Matthew was 8 months old, he was diagnosed with SMA / Werdnig Hoffman disease and was told he would not live past his 3rd birthday. He is now 27. Don't give up hope - she will bring you more joy than you could ever imagine!

    Tami

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  103. Thank God for you! You are a gift and an inspiration. Thank God for your parents as well for "knowing" the treasure they were given and how their courage would inspire others!

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  104. Avery,

    I can assure you that our LORD JESUS CHRIST has a very special place for you in HEAVEN. You are a very special and beautiful
    little girl. I know that Heaven is a perfect place for little
    angles like you. All that your mommy and daddy need to do to remember
    you, is just look up to the heavens and see your smiling face.
    May Our LORD watch over you and your mommy and daddy.
    GOD BLESS YOU

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  105. God bless your family, and little Avery. Imagining how tough it is for you guys is just, unbearable. She's beautiful, her eyes, her face, her smile. I have to say, you guys are amazing parents, I can imagine how proud Avery would be.
    This is coming from a 13 year old. <3

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  106. I am Joellen Elaine and I believe as long as you believe it's incurable, you will be right. In love I write this. There are other realities here; she does not have to die to bring awareness about the disease, better... she can and could live and bring awareness to so much more. Our bodies are designed to heal themselves and as a gift to you, I am willing to show how. I believe she can live, I want to tell you more. I know she can live. Have some conviction and restore your hope. Skype 408 512 2648 you must leave a message here and I will return your call or JoellenElaine@hotmail.com I am in the Silicone Valley, California, put me on your bucket list.

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  107. I just wrote, I am JOellen Elaine and my comment is really not for anyone but the family. I'd rather it not be posted. I can help, I know how, I see miracles everyday and it can be private and personal between us while I share with you what I know. Think about the impact you could have when I am right. Your daughter can live there is still time, sooner than later is better. There isn't anymore drugs you need, tubes or anything, it's not religious is just 40 plus years of cellular research western medicine doesn't recognise and I don't understand why or pretend to. I have just personally seen resultz, healing in unbelievable ways, and I want to help you. Sincerely, Jo El

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  108. My heart is heavy and breaks for you precious Avery. I pray that God watchs over you and that he holds you close in his loving arms. I also pray and have the faith that you will receive a healing miracle. God Bless you sweet Angel!!

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  109. The most amazing journey ever. I am so gracious to get to follow you on your journey. You are such a gorgeous baby and you have a wonderful mommy and daddy. Also, dont forget all the other supporters you have, we will be fighting this battle with you. I am going to do my part and spread the word of your blog not only to Ellen but also personal text msgs to friends all over the world to watch for your journey. You know how thoses chain messages get getting quick. You truly are a blessing & I am so thankful to come across this blog, it made me open up my eyes. I feel a little bipolar- you made me laugh, you made me cry, you mad me mad at the medical world, you made me smile, you made me realize the important things in life should not be set aside but enjoyed today because you never know what tomorrow will bring and i want to thank you for that. "Keep beaming bright you little sunshine" Cant get over how beautiful you are with that radiant smile. Many xox's to you and the family. AVERY NEVER GIVE UP!!

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  110. Believe in God and he hears your prayers. God never gives you something that we can't face. My family will be praying for your family. I know that if you have faith God will give you that miracle you so long for.God bless

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  111. Dear Avery,
    You are such a special person and you have really touched me through your story.
    Thank You!

    Kenny

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  112. Your daughter is beautiful and a gift from God. Our son, Brent, was born on November 16, 1984 and died on August 5, 1985 from SMA type 1. I understand all you are experiencing. I included Brent's story in Chapter 5 of a book I wrote. The title of the chapter is "Steep Hill," because that's what Brent means and it seemed fitting. God can use anything for good, even the most heart-wrenching experiences like losing a child. Bless you....and I hope you make it on Ellen! :)
    Laurie Johnson from Montana

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  113. Hi sweet baby Avery!! I am from Houston, but unfortunately I am in Mexico for the next two months. I would nothing more to meet you, so please keep fighting. Not just for me, but for your whole family. I know they love you very much and have lots of milestones they want to do with you.

    Lots of love from Mexico,
    Stacia <3

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  114. If I could give you a miracle, I would.

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  115. May God bless you Avery :). Things happen for a reason, be positive Avery's mummy and daddy.

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  116. DEAR PARENTS OF AVERY,

    THERE IS ONE WAY TO SAVE YOUR BABY.

    USE MIRACULOUS WATER PROVIDED TO US BY OUR BLESSED MOTHER.

    THERE ARE MANY KINDS, BUT IT'S FROM OUR SAME MOTHER, THE BLESSED VIRGIN MARY.

    YOU CAN OBTAIN IT FROM CATHOLICS, OR SEARCHING FOR IT THROUGH THE WEB.

    ALL YOU NEED IS FAITH.

    Yours in Jesus through Mary, accompanied by St. Philomena,
    rafaelmarie

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  117. Wow!!!!!!!!! I just read your blog and it is AMAZING, Avery! You're such a happy, beautiful baby girl that's teaching us all something so important... smile and live life! You're blessed and God's hand is upon you. HE WILL take care of you and HE WILL protect and comfort you, but right now... keep enjoying this time with mommy and daddy who love you soooooooooo very much. Your parents are just as beautiful as you are. Now you know where it comes from. LOL!

    I will definitely keep you (and all the other babies who carry this SMA illness) in our family prayers. We will help you pass your message along and let others know about SMA.

    I don't know you, Avery. But I love you!

    Lucy Benjamin <3

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  118. Dear Avery,
    You are a very beautiful young lady. I wish all the best for you. I heard you were going to college soon. I am too, we could be dorm mates. :) I just want to let you know(in case you were to forget) that you are a very special girl and there are a lot of people praying for you. Your lucky to have such wonderful parents that love you so much. You'll be in my prayers.
    Sincerely, Lexi

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  119. Hi from Chicagoland Avery (and Mom/Dad). I'm a mom (of a daughter with special needs). I know how special you are and how much joy you bring to them. You are Epic and Amazing!
    Now, I'm not here to be sad. Like your mommy and daddy I want to bring you smiles, peace and joy! And. I'm not telling you what you should have on your bucket-list, BUT. Don't forget Bubbles. Yes BUBBLES. Nothing like bubbles floating around in the air and popping on your head, hand or feet. :-) I know my daughter to this day (and she is over 18 now), still loves them.
    Avery. You are a gift. The most precious gift. And please believe me when I tell you that as long as I live. I(and my family) will NEVER FORGET YOU and will always have a place in my heart. xoxo

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  120. Your family is absolutely amazing Avery. You are very lucky to be so loved. It brings tears to my eyes. You are a very lucky little girl, and I totally agree that God has an amazing purpose for you!

    Jill

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  121. Hi Avery
    I was reading your story in between studying for my up coming medical boards. Your story had struck a cord in my heart. You are truly an inspiration. Your story and your parents courage is truly powerful. Reading your story defiantly has inspired me to become a better practitioner.

    S. Choudhury

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  122. I am so blessed to read Avery's blog and to be touched by the positive energy and gratitude that you share with the world. Your story and the gorgeous pics are heart-warming. Your smiles emanate such warmth and depth of love....not only for Avery but for those you want to help. I am happy to share your inspiring story - you have truly been blessed with such a little angel! Many blessings...xo.
    Jackie

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  123. Hi Avery,

    You go girl!! You are so lucky to have such a special mommy and daddy who want you to be all that you can be. No wonder you are smiling all the time!! What a beautiful family you have! Your love and that of your family are touching the world in so many ways and I'm glad that you are able to share your story with us. I look forward to seeing pictures of you in your first Halloween costume--I just loved the bunny ears for Easter :)

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  124. Dearest Avery.

    I found your story on AOL. Your story is very, yet very uplifting. You have the same name as my granddaughter. As a mother with two children with genetic nuero problems, I feel you and your family's pain. You are very beautiful and precious.
    Many prayers to you. God's angels will help and protect you. I look forward to following you.

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  125. SMA never took her smiles away.

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  126. I love you so much sweet cakes. Im smiling for you everyday munchkin kisses and hugs. :-) god bless you!

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  127. I just read about your passing a few minutes ago and am deeply saddened. For your mommy and daddy I wish them peace and my prayers. You were a very much loved little girl by all who came in contact with you and/or just heard about you and a very special little girl who smiled through everything. Thank you for sharing your all too brief life with the world, you won't be forgotten and neither will SMA. Peace, love and all the comfort I can send to your very wonderful parents.

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  128. What a beautiful life! I am so sorry! I know you are probably overwhelmed with condolences right now. When life settles down, please know that there is an amazing community of parents out there who have children in heaven. It doesn't take away the pain, but knowing you are not alone helps get through the day sometimes. One amazing place to start is www.glowinthewoods.com. I wish you strength and love!

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  129. Sweet baby Avery, My heart is hurting so bad seeing that your time came to go to Heaven...You will be missed so much by EVERYONE! To you're mommy and Daddy...I'm so sorry for your loss, losing a child is the worst but I can tell you it eventually gets a little more bearable over time. We lost my daughter and my nephew 4 days apart, had a double funeral...its gets easier but the feeling inside NEVER goes away! You are all in my thoughts and prayers. Please keep us updated on how you are doing... R.I.P..SWEET BABY GIRL, WE LOVE YOU!!

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  130. Dear Avery,

    Thanks to Yahoo my son and I were able to read about your story. I had never heard about the disease you once had, you have now educated one more person. My son sitting next to me says that you are strong baby. (He's 5 and he says you are sooo cute!)I know your family and friends are sad about your passing, but I know they are grateful to have had you in their lives. You have touched mine and my sons heart. Spread your wings Avery and God Bless your family.

    Leslie & Skylar

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  131. Baby Avery , you have a wonderful parents. Please continue your beautiful smile in heaven.

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  132. I am sorry to hear of such a wonderful life being cut so short. Your smile is so beautiful it brightens my day, just as my own children (Ryan 5, Makayla 2, and Ayden 4months) do. God bless all and please smile down on all us.

    The LaRocque Family
    Stephanie, Robert, Ryan, Makayla, and Ayden

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