Sunday, April 29, 2012

Parents' online bucket list for baby dying of spinal muscular atrophy goes viral

This is not the first online bucket list to go viral; we've written about others before. However, it's an online bucket list for a baby dying of spinal muscular atrophy, written by her parents, as opposed to the actual person.

Avery Canahuati suffers from the rare and incurable spinal muscular atrophy. Spinal muscular atrophy (SMA) is a genetic disorder that attacks spinal neurons and see muscle function debilitate. There are three severities, and Avery’s is Type I, the most severe kind. SMA type I is also called Werdnig-Hoffman disease

Doctors told her parents Laura and Mike Canahuati, of Houston, that their infant girl has only about 18 months to live. The news came, ironically, on Good Friday this year.

A bucket list is a list of things a person wants to do before they die. In this case, Laura and Mike Canahuati created the blog, Avery's Bucket List, and it has gone viral. One can watch the view counter on the page rapidly go up as viewers check into the site, and it rises rapidly. It's already over a million views.

Avery also has a Facebook page, here, with over 55,000 likes.

The blog isn't just a bucket list of things they would like Avery to experience before she dies, but it also chronicles the world from Avery’s perspective. The blog tracks the family's activities, and checks off things from Avery's bucket list as they go.

A survey in the sidebar shows the rarity of spinal muscular atrophy and knowledge of it. Asking if visitors knew aboutSMA prior to Avery's story going viral, 88 percent have voted no. Ironically, spinal muscular atrophy is the No. 1 genetic killer of children under the age of 2 in the U.S., but most people are unaware of it.

“I have a lot of living to do in just a little bit of time,” Avery “wrote” on the blog. “In everything I do, the two most important things are that I’m spending time with my mommy & daddy, while at the same time spreading awareness for SMA.”

You can read the section of the blog devoted to Avery's bucket list here, and see how she and her parents are doing at crossing out goals.

You might think a number of items on the list are not doable, due to Avery's age. You'd be surprised, though. For example, she's already scored her first kiss. Avery "writes":

“His name is Cooper and he’s 19 months old (I just love older men, they’re so much more mature than 3 & 4 month olds). My mommy and daddy said this might be the best kiss since Ryan Gosling & Rachel McAdams in The Notebook.”

Cooper also has SMA.

The last thing on the bucket list: to overcome her illness. That is unlikely, as the research is too far off to save Avery. Instead, the intent of the blog and bucket list is to raise awareness for the disease and help find a cure. Laura Canahuati said, “No one should have to go through this.”

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