My name is Addison, I am (almost!) 18 months old. My mommy showed me your blog and I wanted to reach out and give you a big virtual hug. I don't have SMA, but neuromuscular problems are why they think I can't poop properly. I am currently undiagnosed and my family has been through so much with me, too. I know what it feels like to have to go to the doctors all the time Avery, and I just want you to know you aren't alone. There are many other brave little girls just like us, all over the world. The diseases are different, but the outcome is the same: families clinging together to give kids like us the best possible life.
My mommy thinks its a special gift that kids like you and me don't have to know what lies ahead and all the struggles we will face. It is our brilliant smiles and voracious spirit that keep everyone positive in hard times. We may have more problems than other kids Avery, but we still know how to enjoy life and that is so important. Your bucket list is so much fun to read, it looks like you've been doing so many wonderful things already. My mom shows me pictures and talks to me about them.
I think its awesome that you are telling the world about SMA. Avery, you really need to add 'save a life' to your bucket list because you may already have done that just by sharing your story with the world! I will be writing to Ellen (with Mommy's help!) and urging her to have you on the show. (Please also add become a television star to your bucket list for me!) I will be watching and cheering you on!!
I believe that we are bigger than our diagnosis (or lack of, in my case) - your disease doesn't define who you are Avery. I look at your pictures and I don't see SMA, I see a beautiful and perfect little girl like me who wants to play and laugh and love. You keep fighting Avery, I'm not much older than you but I've been around the playground once or twice, and I've learned that smiling in the face of fear is one of the best defenses. Looks like you've got one awesome mommy and daddy taking care of you, so no advice there. :)
Thank you for sharing your message about SMA with the world, Avery!
Addison from 'Chasing Zebras'
**Readers, you can follow Avery's journey over at http://averycan.blogspot.com/
Please support this little girl and her family in reaching out to Ellen on May 1, to raise awareness of testing for SMA. (But mostly, so FABULOUS Avery can look good on TV!) ;)
TWITTER - send Ellen tweets about me.
FACEBOOK - send Ellen messages on Facebook.
CONTACT HER SHOW - Here's Ellen's webpage for "Do You Know An Inspiring Person".
Fight SMA (www.fightsma.org)