Parents Create Avery's Bucket List For A Dying Girl: What Will You Add?
Update: Sadly, Avery passed away from cardiac arrest yesterday. Despite their shock, her parents added a poignant message to their blog this morning.
Avery wants to do a lot of things in a short time. She may only have a year to live, but her parents are making sure that each and every day is filled with amazing moments. And they are taking detailed notes along the way, while the world watches.
Avery was diagnosed on April 6 with Spinal Muscular Atrophy (SMA), which is a genetic disease. Her legs are already immobilised by the disease and soon her arms will be too. Eventually, the disease will stop her lungs from working. Doctors give her about another year to live. But Avery's father, Michael Canahuati, told the local news in Texas: “We can watch her die, or we can let her live.”
The Texas-based Canahuatis have created a bucket list for Avery and they hope to check off a few things every day. Some things are simple like having a sleepover and inviting friends to a birthday party. Some are harder to achieve like being on The Ellen Show or running with the bulls.
The site has already racked up 2.1 million views and 83-thousand Likes on Facebook - it goes up every second (in other words it has gone viral).
The posts are jokingly written from Avery's perspective, but never veer off from the main goal which is to raise awareness about SMA and to get pre-natal screening for the disease which is the number one cause of genetic infant death. (If you are pregnant or planning on becoming pregnant and are concerned about SMA, talk to your doctor.)
The Canahuatis endeavour to make each day one filled with life-affirming events. They cross multiple items of the bucket list and document the highs and lows of Avery's day for their many fans.
But the top of every post reads:
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
Like the Dragon Mom, these parents have chosen to embrace life's fulfilling moments even though they have a limited time with their child. They have chosen to love fully and completely and share it with the world.
I don't know if the Canahuatis' crusade will end with testing for SMA becoming routine or with Avery appearing on The Ellen Show. I don't know if the number of Facebook Likes or blog views will ease the pain of their child's impending death, but it can't hurt.
In the meantime, there are a few hundred of other things on the bucket list to go.
What would you add to Avery's bucket list? What do you think of what they are doing?
UPDATE: Sadly and suprisingly, Avery passed away yesterday from cardiac arrest brought on by SMA. Her father posted a message on the blog, urging people to still spread the word about SMA and donate to find a cure:
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.
Michael Canahuati asks that others help complete Avery's Bucket list in her honour and he says he will continue to be an activist in raising awareness and funds to combat SMA.
Want more chaos? Last year, I wrote a letter to Scholastic detailing our troubled relationship.