When doctors told Laura and Mike Canahuati their infant daughter, Avery, wouldn’t live past 18 months, they were devastated. Avery was diagnosed with spinal muscular atrophy type 1, a rare and incurable genetic disorder which kills more children than any other genetic disease.
Here’s where Avery’s story takes an unexpected turn. After a few days of grieving, knowing there was nothing that they or their doctors could do, Mike decided to make the most of Avery’s short life. He set up a blog for Avery, written in her voice – and laid out some life goals.
The front page of Avery’s blog reads: “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.”
Avery’s bucket list is heartbreaking to read, with goals as mundane as “reach my 5 month birthday” or “be potty trained,” and ambitious as “speak in front of Congress,” “be on American Idol,” and “overcome my illness.” The blog serves as a reminder to everyone how much we take for granted – and how devastating it is when a child won’t even be able to reach normal milestones. In the past month, Avery managed to cross an impressive number of items off her list – from flying a kite to getting her first kiss.
On April 30, Avery passed away suddenly at six months from complications related to her illness. Mike is continuing to maintain the blog, hoping to spread awareness about SMA and help fund research to hopefully help other children with the disease. 1 in 40 people carry the gene for SMA, and it’s not included as a routine genetic test for prospective parents.
Avery’s parents are currently supporting a donation drive to help fund an experimental treatment which may, one day, be able to treat children with SMA. An anonymous donor has agreed to match all donations up to $500,000. More details can be found on Avery’s Bucket List.
Image Credit: Mike and Laura Canahauti