Avery has been diagnosed with spinal muscular atrophy, which is a genetic disorder that attacks spinal neurons and progressively weakens muscle function. As Avery’s was Type I (Type I is also known as Werdnig-Hoffman disease), the prognosis is poor: doctors have told her parents, Laura and Mike Canahuati of Houston that their daughter has only 18 months to live.
More from Avery's bucket list 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.”
Avery's Bucket List is a blog created and written by her parents. It is written from Avery's perspective, and chronicles her life as her parents try to check off as many of her bucket list items as possible (a bucket list is a list of things a person wants to do before they "kick the bucket," or die).
She's already checked off one item that's very important for little girls. She's had her first kiss, with another baby that also has spinal muscular atrophy. Avery "wrote,"
“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.”
Her blog has gone viral. It already has over a million hits, and the view counter on it rises quickly if you watch it. The blog was designed to not just track her progress, but to bring attention to spinal muscular atrophy, which is the No. 1 genetic killer of children under the age of 2 in the U.S. Most, however, are unaware of it, as evidenced by a poll on the site.
Spinal muscular atrophy in its Type I form usually manifests before the age of six months. WIkipedia describes it as follows:
"The severe form manifests in the first months of life, usually with a quick and unexpected onset ("floppy baby syndrome"). Rapid motor neuron death causes inefficiency of the major bodily organs - especially of the respiratory system - and pneumonia-induced respiratory failure is the most frequent cause of death. Babies diagnosed with SMA type I do not generally live past two years of age, with death occurring as early as within weeks in the most severe cases (sometimes termed SMA type 0). With proper respiratory support, milder SMA type I phenotypes, which account for around 10% of cases, are known to live into adolescence and adulthood."
The goal of the blog is to spread awareness of SMA, as there is little hope for Avery, long-term. Avery's mother said, “Our goal for Avery to be the face of SMA. Just like when you say the word cancer, I don’t think there’s a single person who doesn’t know what cancer is, we want it to be the same for SMA."