Published on May 1st, 2012 | by Dimitria Parisis0
Avery’s Bucket List: Paradoxically fuller now that she unexpectedly dies at 5 months old.
When coupled with an emotional tale and a goal, the internet can sometimes prove to be an incredible source of good. This was seen with the sensational popularity of Avery Lynn Canahuati’s blog, averycan.blogspot.com
Avery was a child who was diagnosed with SMA, or spinal muscular atrophy type 1, a rare genetic disorder. At about 5 months old (Avery was born 11-11-11), Avery and her family were told that she only had up to 18 months to live. In the wake of this traumatic and devastating news, her father helped her to blog all of the fun and meaningful adventures Avery would like to take before she passed. Her blog chronicled her ”bucket-list,” offering what she would like to accomplish, what she had accomplished, and asked for ideas from friends and family. Soon the blog began to grow.
The list included fun things such as,”wear a big bow on my head” or “get a tattoo” (a temporary one of course), as well as other activities that included mom and dad.
Only a few days ago Avery’s parents were told that Avery was doing well, but unfortunately yesterday afternoon Avert passed away due to pulmonary complications. Avery’s father blogged the following:
“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.”
To add to the heartbreak, a letter “written by Avery” was also posted:
“Dear Mommy & Daddy:
If you’re reading this it’s because I’ve gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I love them too. In fact, tell everyone who loved me that I love them and I appreciate them caring about me.
When I started writing my blog, I thought I’d only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I’m flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.
You see, I’d never heard of SMA prior to being diagnosed with it, yet there’s thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene. Without awareness and without a cure, I’m afraid more of my friends are at risk to have their lives drastically shortened by SMA.
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.
To all my SMAns, you followed me, now please follow all of my friends.
Mommy. Daddy. I love you every bit as much as you love me. And while I’m not here physically, I will forever live in your minds, as you will mine.
Avery, Aviator, Aves, Scuttlebutt”
Now, as the news of Avery’s death begins to spread, so with it does the awareness of SMA, the true purpose of the blog. Currently the blog has almost 3,400,000 views, and keeps growing (a ticker on the blog shows you just how fast views are adding up), something I’m sure would make Avery very happy.
Avery’s father leaves off by blogging:
“One of Avery’s newest Bucket List goals was to help raise the remaining $365,000 (out of $1mil) needed to bring Dr. Kaspar’s SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar’s SMA Gene Therapy could cure Avery’s friends or at the very least offer advancements towards a cure for them.”
Perhaps now that this story begins to grow and spread, Avery’s goal of reaching $1M will materialize.
Until then the public can continue to write about it, re-post the blog, and share the story with anyone they want to. This is the power of the internet. This is what can be done when civilians gather around an emotional goal that truly touches them. So thank you internet. Thank you for letting me know about Avery. I’m not ashamed to say I wasn’t aware of SMA before just now, but now that I’m aware, I’ll certainly try to inform others.
Good luck on your new journey Avery!