Avery Canahuati has never gone swimming or worn a Halloween costume, but she has received her first kiss. She is just 5 months old, and these three items have already been placed on her "bucket list," a heartbreaking catalogue of things to do before her life is over. Her time to complete that list is limited.
UPDATE: 5/1 1:55 a.m.: Mike Canahuati, Avery's father, writes that Avery passed away yesterday, April 30 due to pulmonary complications related to SMA, and offers instructions for donating to organizations that are helping to find a cure.
On April 6, according to the infant's personal website, her parents, Mike and Laura, of Bellaire, Tex., found out that she has spinal muscular atrophy or SMA, an incurable genetic disease, and she won't live past age 2. Creating the bucket list, and writing about it on a blog, is the couple's way of coping with such a devastating diagnosis, ABC News reports.
Each blog post, written from the baby girl's perspective, is surprisingly playful and packed with pictures and updates, but they all have a singular focus -- to spread awareness of SMA and "make sure other children and their families don't have to go through what [Avery and her family are] going through." This goal is reflected in the following wish on her bucket list of over 100 items: "Go viral on the internet -- I know I'm not singing a song, doing anything funny, saying something politically incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face."
And it seems as though she's succeeding. As of Sunday, the site had racked up 1.5 million page views; its corresponding Facebook page had over 80,000 fans.
Judging by the comments, most readers assume Avery's mother is behind the blog. However CNN reports that Avery's ghostwriter is her dad, who has had fun taking on the persona of a little girl.
When Avery had her "first kiss" with a boy -- another baby diagnosed with SMA -- "she" wrote:
I appreciate everyone forwarding my story to help inform and educate people about SMA. With that said, right now that's not even the most important 3-letter acronym I want to talk about, because O-M-G, a B-O-Y totally kissed me yesterday and he is soooooooo cute.
As Mike explained to CNN, he just conjures up a little girl's perspective when he posts.
While highlighting adorable moments and milestones in Avery's life, her dad also uses humor on the blog to vent the family's frustrations with healthcare administrators. Avery had to have a G-tube put in so that she can be fed without having to exert energy, but there was a mix-up at the hospital the day of her surgery. Afterward, "she" blogged about a rude doctor and quoted her daddy as saying: "Some doctors are born to test patience, I mean patients, and some are born to help them." And their overall goal with the project is to tell enough people about SMA so that doctors have to routinely start offering testing for the disease, which the Canahuatis say was never an option for them.
The blog never explicitly details hardships. Even though ABC reports that Avery has already lost the ability to move her legs and can barely move her arms, and her parents constantly monitor her oxygen levels since babies with SMA have difficulty regulating their breath, Avery's Bucket List is first and foremost a place for inspiration. One recent post was a photo-essay, a compilation of the smiles in Avery's life. The next day's post was a similar collection of Avery's "new friends" -- dozens of happy babies, whose parents had heard that one of the things on her bucket list was to "collect a thousand smiles."
Each hour, more photos are posted, the page-view counter rolls, and the Canahuatis' message spreads even further. (Their goal for this week is to get Avery on "The Ellen DeGeneres Show.") For now, the family just keeps crossing items off Avery's list -- one baseball game, Ferris-wheel ride, manicure and, with luck, birthday at a time.
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