Wednesday, April 18, 2012

My Friend Estella's Story

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

Thank you to everyone who is sharing my message about SMA.  But remember, it's not just about following or sharing my story, it's about knowing my story, as well as the stories of other families who have battled, are currently battling, and will battle SMA of all types & severity in the future.  But then most importantly knowing what SMA is, so together we can all make a difference with regard to the future of SMA in our society.

Before I write about my last two days, I want you to meet my friend Estella.  I haven't actually met Estella yet, but I hope she'll accept my friendship sometime in the extremely distant future.  You, see on the same day my mommy & daddy were crying tears of joy bringing me home from the hospital, Estella's mommy & daddy were crying for an entirely different reason.

My mommy and daddy cried watching my friends story, but like so many others before, Estella's story is one that deserves to be told.  And while we all still have plenty of hope for my future, it gives me, mommy, & daddy some comfort knowing that whenever my time does come, I have a friend waiting for me who also talks to her giraffe and is happy.

Estella & I are not the first, nor will we be the last.  Think of us all and let's kick SMA's...BUTT (I don't want daddy to ground me again).

Items I Can Scratch Off My Bucket List:
1. Share my friend Estella's story

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 are an amazing family and I wish you all the luck in the world with you beautiful girl. Your ambition and immense love and ways of life are enlightening. YOu are making everyday an amazing one. Your family is in my prayers..

  2. Thank you for sharing Estella's story, Sweet Avery, you are touching lots of hearts. How amazing it will be to see what comes about in battling that nasty SMA, because your Mommy and Daddy are allowing you to share your story with the world. I'm thinking of some things you should add to your Bucket List, that you can do when you come to Fort Worth & visit Nana Sandi's sister Carolyn. Do you have a cowgirl hat yet? You'll need one to watch the Herd. Also, there is a cool old steam train called the Tarantula (I know, right? Who names a train after a yucky, creepy spider?) But it is a real steam engine with vintage cars and you can ride it from Grapevine TX to the Stockyards and see all the cool stuff there. Then go back to Grapevine and check out Legoland. On Sunday come to Great Aunt Carolyn's church, the choir is praying for you all & would love to meet you! Then you can have our Pastor Dennis help you climb the Big Treehouse and slide down the great giant slide (I promise, he loves an excuse to slide) Mommy and Daddy can play too. We all hope to meet you soon, Avery. Have lots of fun & smiles with your bucket list and keep spreading the word about SMA. You are doing a wonderful job!

  3. I post about you and your blog almost daily on Facebook. I laugh and cry my way through your blogs. You are a beautiful little girl with some amazingly strong and inspirational parents. My daughter is just a month older than you, Avery, and I think of you every time I look at her; I cry in joy and in sorrow. I wanted you to know that I was training for a 5k, but am going to train harder to run a 10k and will be running for you, for SMA, and for all the babies affected by this unfair condition. You are an amazing little girl and I look forward to "watching" you check more and more items off your bucket list. If you want to take a ride to the top of the highest mountain in the Northeastern US, I'm your girl! Hang in there, little lady.

  4. xoxoxoxo from Tilghman Island, MD

  5. Avery,
    Thank you so much for sharing your story, and for sharing Estella's story as well. I promise to share your blog with as many people as I can in order to raise awareness for SMA. I also wanted to thank your Mommy and Daddy for being such wonderful parents to you and making us all realize what is really important in life. See dear Avery sometimes in this world we get caught up in the life and material objects and we lose sight of what really matters in life. When reading your blog it makes me want to go and hug my family and make sure they know every single day how much I love them. We all take things for granted, and we take life in general for granted. You, your Mommy, and Daddy are making us all and stop and think about what is truly important in life and for that I thank you. You are a very lucky little girl to have such wonderful parents who will ensure every day is lived to the fullest and is full of love, hugs, and smiles!

  6. Oh sweet Avery- if only we all lived with such urgency and purpose. God bless you and your parents.

  7. You guys are amazing parents.
    Sending Love , wishes, prayers and hope!

  8. I will be praying for your family! please know god is good and he has the final answer. Im at work right now crying, I admire your strength. Your strength brings knowledge so that people will be aware, and that brings people together to fight for something worth fighting for. Thank you for sharing your story and know there are people that are going to continue to fight for a cure! blessing and love to you all

  9. Just an idea to help you accomplish the driver's license goals. Chuck E Cheese's as well as Legoland (in California if you are heading that way I know a few places on the bucket list involved CA) have rides that will print you out a "license". I know at Legoland it's for a ride.
    At chuck E Cheese you sit in a car to "drive". While you are riding it takes your picture and prints you out a "drivers license".
    Your blog is an inspiration and heart breaker as well as a great informative site.
    I actually knew of this disorder only because my friend's son passed away from it a few years ago.
    May you enjoy all of your days with your beautiful girl, and learn as much from her as you can :)

  10. Avery, you are a very loved and lucky little girl! Thanks for sharing your story with us ;) and for exposing thousands of people to such a terrible, tragic thing. You have thousands thinking of you and smiling with you!

  11. Avery you are a beautiful and amazing little girl. I very much hope you are able to complete everything on your list and more. Your story makes me want to wake my little girl from her nap so I can hug her(She is your age). You and your parents are very brave. Stay strong, continue to fight, and continue to expierence some amazing things in your life with some amazing people.

  12. I wrote a blog post for Avery today on my website. :)

    I am a wife, a mother, an author...and her story touched my heart like no other.

    Avery, this is for you sweetheart.


  13. Avery, I wanted to let you know that I started a FirstGiving page in your honor for the race I am running in June. I am telling everyone I know and all those I don't about you.

  14. Dear Sweet Avery,
    Thank you for sharing your story! You have touched my heart in so many ways! I pray for you, as do my children. I know that with your story out there, more people will become aware of SMA. I would love to meet you and help you reach your 1000 hugs and smiles goal...if you are ever down by Lake Jackson, look me up!!! Stay strong sweet girl...God Bless you!

  15. You inspire me daily Avery! God bless you! Wrote about you in my blog, only have one follower but it's all good:-) I also tweeted about you, FBed friends and family, emailed friends, co-workers, and even the boss! I will spread your story and increase awareness.

  16. I'm sharing your story with everyone I know, Avery. I wish I could meet you and help you cross off some things on your bucket list. I'm in Pennsylvania so if you're ever here - let me know!
    I know you probably already know this but it is obvious you have absolutely wonderful parents who are really making life fun for you!

    Much love to you and your wonderful, beautiful family.

  17. Hi Avery,
    I saw a blurb on the evening news about you here in Maryland and I decided to check out your blog! Your parents are such beautiful people! They are strong and have huge hearts. Your friend Estella's video was so touching and beautiful, thank you for sharing it! Praying for you and your Mommy and Daddy too! Your Dad is a swell guy writing for you and the video of you and your Mommy dancing made me cry like the dickens! Looking forward to hearing about your adventures and Im rooting for the Ryan Gosling kiss! Maybethe Ellen show can invite you to come and then he could be there as a surprise guest, it would be so romantic....ahh a girl can dream right! Nighty nite baby girl!

  18. Dear Avery,
    I've always had a strong connection to your Nana. You see, we've shared lots of things through life in regards to our families. My son James and your Uncle Bryant were born around the same exact time. Your mommy and my daughter, Tiffany were also born close together. Your Nana and I were both special ed teachers at the same school for many years. I even had students in my class who had SMA and they LOVED coming to school which I know you will as well! A few more things we share is that we both became first time grandmas and my grandbaby is also a beautiful little girl like you. Last, but not least, you've always been special in my heart because you and I share a birthday! I know it's a little bit early, but, I want to invite you to join my granddaughter, Keira and I for a trip to Build a Bear. Keira thinks every little girl needs their favorite "snuggy" to take everywhere, even to bed every night! Who knows, maybe you could choose your favorite "snuggy" from the Build a Bear store and then they can go with you on your wonderful adventures as you fulfill your Bucket List! Keira thinks we should go get frozen yogurt too. Please tell your Nana to let me know when you're going to be coming to New Braunfels for a visit and hopefully we can arrange to meet at La Cantera. My son and his wife live in Katy near you so tell mommy & daddy I can also come there and take you to the Build a Bear store closer to you. I'm famous for "spreading my birthday out" over long periods of time so don't worry about waiting till November! When you're ready, Keira and I are too! Even though you don't know me yet, you need to know that I love you and your precious family. I'm praying for all of you and asking everyone I know to do the same! Hope to hear about our "Build a Bear Birthday Date" soon!
    Much love...Debbie (or Didi as Keira calls me)

  19. Princess Avery! My daughters and I just LOVE your blog! Be on the look out in your mailbox :) You will be able to croff off Wear a BIG bow...and then add Wear a dress with my name on it, and then cross it off :) If you and your mommy want to see your bow and dress they can go look on my blog and see the picture!

  20. An amazing blog thanks for spreading thee word about SMA. My niece has SMA, this is a great link to a video story of some really amazing girls that made something on her bucket list come true. Becoming a cheerleader!

    We pray your little one might be able to accomplish everything on her bucket list.

  21. avery, you and estella are both huge inspirations. lets all kick SMA's butt. ;)

  22. Estella & my daughter share the same birthday. This is sad. Very touching. Love to you Avery!

  23. you and estella are two of the most beautiful, brave, inspiring, amazing people in the entire world. you both motivate so many people to fight SMA. <3