“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!”
With these words readers are welcomed to the web page Avery’s Bucket List, written by 5-month-old Avery Canahuati (with the help of her father Michael), who suffered from cardiac arrest and passed away on 30th of April.
A month before her tragic demise, Avery was diagnosed with Type 1 SMA, or the most severe type of spinal muscular atrophy, an incurable, genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Having Type 1, doctors gave Avery 18 months to live.
To cherish every moment with their daughter, Laura and Michael Canahuati, from Bellaire, Texas, decided to start a bucket list blog so that their daughter could condense all essential experiences into her life, no matter how short.
The list included items like “have a bad hair day,” “eat a cupcake,” “play with Play-Doh,” and “not let SMA take my smile away.”
Michael wrote heartfelt, humorous blog posts penning down frequent updates detailing joyous experiences such as her first kiss and having a tea party, all from the point of view of a little girl, while at the same time including facts and figures about the disease that took his daughter’s life.
The blog quickly went viral with over 5 million page views, making Avery a minor celebrity and earning her nicknames like the “bucket-list baby.” Her Avery’s Bucket List Facebook page garnered approximately 178,000 likes and her Twitter account is followed by over 10,000 people.
The goal was to raise $1 million for Dr. Kaspar’s SMA Gene Therapy program, which the family says “could cure Avery’s friends or at the very least offer advancements towards a cure for them.”
“When people think of me,” Avery wrote on her blog, “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).”
Even in the blog post announcing her death, Avery’s father continued the ever-hopeful tone of the blog. The Canahuatis posted one final picture of their daughter, gleeful, with a smile stretching wide across her face. The farewell note “written by Avery” closed with a comforting quote for her parents: “And while I’m not here physically, I will forever live in your minds, as you will mine.”
The blog also included the eulogy her father delivered, which included this quote:
“Avery showed us what it means to be courageous, she showed us what true love is, and she taught us many other lifelong lessons. And even in her darkest minutes, as she was being rolled into ICU, she looked up at her nurses and she reminded all of us how to keep smiling. So as I stand before you, I will tell you that if I shed a tear today, it’s not a tear of sadness for my daughter’s passing, rather it’s a tear of pride for what my daughter accomplished in her living. Simply put, Laura and I are the proudest parents in the world right now.”