Avery Did – Every Life has Value
Avery Lynn Canahuati passed away on Monday. She was a little shy of 6 months old. She suffered from a rare genetic disorder Spinal Muscular Atrophy, the #1 genetic disorder that causes death in children under 2. She was diagnosed on 4/6/12. She lived less than a month after her family received the news.
Her remarkable parents decided to create a “bucket list” for their precious baby. Instead of crying and cursing God, they decided to give Avery a life as whole as possible. They had all these dreams for their baby girl; as every parent does. But they had little time, but they decided to make the best of what they were given. The most recent blog post announces the death of their precious baby.
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