I am a father of a little girl and let me tell you when I read the following quote from Michael Canahuati from Bellaire, Texas I had to step outside and gather myself:
“When they tell you your daughter will most likely die within the next 18 months of an incurable disease, that there are currently no clinical trials for, and that it’s the number one genetic killer of infants, it pissed me off.”
My wife and I find ourselves constantly thankful for our daughter’s health while wondering how parents in these impossible situations cope. I honestly can’t say how I would handle it, but I can guarantee you that Michael and his wife Laura are examples of the bravest type of people I can think of. Sure they’re pissed and devastated and hurt but they’re also trying to make a difference and if this write up helps their mission in the least I’m more than glad to do my part.
Baby Avery Lynn Canahuati (photo above via Twitter) is now 5-months-old and has been diagnosed with spinal muscular atrophy, SMA Type 1. Via the SMA Foundation:
Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease characterized by muscle atrophy and weakness. The disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers. SMA is caused by defects in the Survival Motor Neuron 1 (SMN1) gene that encodes the SMN protein. The SMN protein is critical to the health and survival of the nerve cells in the spinal cord responsible for muscle contraction (motor neurons).
Little Avery has already lost use of her legs and she’s beginning to lose strength in her arms. As this horrible disease progresses the atrophy is expected to eliminate her ability to breathe. Here is a video report filed by KHOU out of Houston:
What Michael and Laura have decided to do is to make every moment count and to put Avery’s story out there to draw attention to the disease in hopes that someday other parents and children will not have to go through this same unthinkable ordeal.
“We can sit at home and we can cry every single day, or we can try to make memories with her. We can watch her die, or we can let her live. And through letting her live we’re going to try and educate other people about this so they don’t have to go through it too.”
The Canahuatis have created an online blog, a Twitter account as well as a Facebook page that chronicles the moments that Avery has in the short time she’s been given. Here is the introduction that helps explain the family’s mission via Avery’s blog:
Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I’m almost 5 months old, and this has become my reality. But before I die, there’s a few things I’d like to accomplish…this is my bucket list and my story. SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!
In a recent post via the blog the family shared a video of Avery getting a bath. The blog is written from Avery’s point of view, so here’s what she had to say about it:
My mommy made a new friend named Courtney whose daughter Kaitlin had SMA Type 1 like me. Courtney told mommy that she used to put Kaitlin in the bathtub because it took this thing called gravity away and would allow Kaitlin to move her arms and legs better. OMG, thank you Courtney for telling mommy about this because I had soooooooo much fun…
And here’s the video:
Here are just a few items Avery has scratched off of her bucket list:
1. Getting grounded
2. Teach my daddy the definition of grounded
3. Ignore my parents while watching TV
4. Meet my new medical team
5. Get proposed to by a doctor (you see it your way, I’ll see it mine)
6. Find doctors who show emotion
7. Lick my first cake ball
8.Get a dozen pink roses in the mail
Laura summed it up by stating, “We didn’t sit down and cry that day. We sat there and we made memories with our daughter.”
If you’re interested in helping spread Avery’s story and message here are the links again:
UPDATE: Avery’s father has posted that she has passed away on 4/30/11. Our hearts are broken… Here is Michael’s post:
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.
There is one last letter from Avery and I encourage you to go to the blog link above to read it and reflect.