Avery Lynn Canahuati, who was born November 11, 2011 with spinal muscular atrophy type 1, died of pulmonary complications related to the genetic disorder, Mike Canahuati said on Avery’s Bucket List blog Tuesday.
Avery’s dad, Mike Canahuati wrote, “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 parents shared one last picture of her before she was rushed to the hospital on Monday. “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. I’m going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right.”
The newest bucket list item on Avery’s blog, before her death, was to raise $1 million towards SMA research and Avery’s parents plan to continue to raise money and be spokespeople for the foundation. Avery’s father wrote, “Before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends. I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery’s Bucket List and help her complete items she was unable to.”
SMA is Spinal Muscular Atrophy, a genetic neuromuscular disease characterized by muscle atrophy and weakness that affects as many as 10,000 to 25,000 children and adults in the United States. One in 6,000 to one in 10,000 children are born with the disease, while one in 50 people are carriers of the SMA gene. Parents that carry the disease have a 1 in 4 chance of have a child with the disease.
SMA has four different forms with the most severe form being Type I which manifests before 6 months of age and generally results in death before age two. Patients with milder forms of SMA may not have symptoms of muscle weakness until later in their childhood or not until they are adults.
RIP Avery Lynn Canahuati 11/11/11 – 04/30/12.