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.
Avery Lynn Canahuati 11/11/11 - 04/30/12
Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends. I'm going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right...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.
Love always,
Avery, Aviator, Aves, Scuttlebutt
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.
Love always,
Avery, Aviator, Aves, Scuttlebutt
For those who don't believe that every life has value, go and look at the pictures that this family took of their sweet girl over the last month of her life. They went to baseball games, celebrated Easter, got removable tattoos, among many other activities. Her bucket list.
Avery's short life shows how much love is brought into the lives of a family, even when that child isn't "perfect" by society's standards. Her family was given a gift. One that they will carry with them for the rest of their lives. The world has been given a gift because of this family money is being raised to do more research to help bring a cure. It is too late for Avery, but there is renewed hope for all the Avery's that come later. They may be able to live longer, fuller lives by the generosity of her family.
To Avery's family, our hearts are with you during your time of grief. Rest in Peace, Avery.
Grab a box of tissues and read her story.
Dear Avery
ReplyDeleteSave me a dance in heaven
love
the olde Krow