Dear Mommy & Daddy:
If you're reading this it's because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I love them too. In fact, tell everyone who loved me that I love them and I appreciate them caring about me.
When I started writing my blog, I thought I'd only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.
You see, I'd never heard of SMA prior to being diagnosed with it, yet there's thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene. Without awareness and without a cure, I'm afraid more of my friends are at risk to have their lives drastically shortened by SMA.
When people think of me, I hope they'll also think of all my friends who have been through this and who are going through this now. But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future). And they can do so by spreading awareness and helping to fund a cure for my friends.
To all my SMAns, you followed me, now please follow all of my friends.
Mommy. Daddy. I love you every bit as much as you love me. And while I'm not here physically, I will forever live in your minds, as you will mine.
Avery, Aviator, Aves, Scuttlebutt
Also, before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends. I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery's Bucket List and help her complete items she was unable to. And when you do, take pictures and send them to Avery's Bucket List so we can show the world and continue to share Avery's message.
Once that goal has been achieved, Avery asks that all monetary donations at this time be made in her name to Fight SMA (www.fightsma.org).
Here's the last picture we ever took of Avery. It was taken approximately 15-20 minutes before her lung collapsed and she went into cardiac arrest. She was sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying "Hi".
|SMA, you did not take my smile away!|
...I found a few archived blogs that Avery never posted...give me some time and I will share them as well as many stories of other children with SMA (past & present).