April 30, 2012
Avery's Bucket List
Avery is a sweet little baby girl who has been diagnosed with SMA. Instead of spending every waking hour lamenting about their daughter's condition, Avery's parents are trying to celebrate her life by writing a humorous blog, Avery's Bucket List, using the voice they imagine she would have, from her perspective.
The blog's heading:
"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!"
When reflecting on a recent surgery she underwent, the lighthearted, ever-positive infant offers in a blog post,
"If there is a downside to how today turned out, it's that I'm still not feeding well so I'm having to stay in the hospital overnight with an IV in me so they can keep me hydrated for my surgery tomorrow. My less than one hour surgery, just turned into a few days at the hospital surgery. But it could be worse...I could be in prison..."
Items Avery has already crossed off her bucket list include: dressing ridiculously over the top, get picked up by a fireman, and staying up past midnight. And she just recently threw out the first pitch at a baseball game!
Reading about Avery causes my heart to rise up and swell in my throat out of sorrow, but seeing how she and her parents are dealing with her extremely unfair fate makes me feel so amazed and joyful at the ability of the human spirit to triumph and squeeze every precious moment out of life. I applaud Avery's parents for their courage and their mission, and I am humbled by their grace. God Bless you, Avery. Here's to making it through your entire bucket list and beyond.
This is the truest meaning of "baby steps toward changing the world" I have ever come across.
Follow Avery on Twitter.
And Avery's parents have asked everyone to please contact Ellen on May 1st with the hopes that Ellen can help spread the word about SMA on a large platform. Send Ellen a tweet here.
UPDATE: Avery passed away the day I wrote this post. May she rest in peace as one of God's little angels.