Avery Canahuati, the 5-month-old girl who captured the nation's heart with her family's embrace of life despite a devastating diagnosis, died Monday of complications from spinal muscular atrophy (SMA). The disease is the number one genetic killer of children under age 2 in the U.S., with 1 in 40 Americans carrying the gene that can lead to the disease.
The little girl's lung collapsed and she went into cardiac arrest Monday afternoon, her father, Michael Canahauati wrote in an update on her blog, Avery's Bucket List. Babies with severe types of SMA have difficulty regulating their breath and are especially vulnerable to respiratory complications.
"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 doctor's appointment only three days ago," Mike Canahauati wrote in a blog post today. "While we were aware of the severity of her diagnosis, we never lost hope for Avery."
Her father wrote that the disease never took away Avery's smile and he shared a photo of Avery smiling before she was rushed to the hospital Monday.
On April 6, Avery was diagnosed with Type 1 SMA, or the most severe type of spinal muscular atrophy, an incurable, genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Having Type 1, doctors gave Avery 18 months to live.
To cherish every moment with their daughter, the Canahuatis, from Bellaire, Tex., created "Avery's Bucket List," a sweet and joyful blog written from Avery's perspective, where they chronicle her world and track their family adventures, checking things off from the bucket list as they go.
Recently, Avery threw out the first pitch at a minor league baseball game in Houston, got a tattoo, a driver's license and had her first kiss.
The Canahauti family says they will help raise $365,000 to find a cure for SMA.
Image: Avery Canahauti, via http://averycan.blogspot.com/