Baby with ‘bucket list’ dies after losing battle with rare genetic disorder

By Daniel S Levine,

The six-month-old baby named Avery Lynn Canahuati who had her own ‘bucket list’ lost her battle with a rare genetic disorder on Monday. Avery’s blog, which was set up by her parents, recently went viral and was set up by her parents.

On Avery’s blog, her father announced her death on Tuesday. Mike Canahuati wrote that Avery passed away from pulmonary complications, which were caused by the disease SMA. “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,” he wrote.

“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,” Canahuati added.

According to CNN, Avery’s parents had been writing the blog as if she could live past age 2 and was able to experience events as a healthy baby. Canahuati of Bellaire, Texas, wrote the posts. In his last post before Avery’s passing, he showed off pictures of Avery at a ballgame and throwing out the first pitch with her parents.

The parents have now dedicated themselves to raising awareness for SMA, a rare disease that can limit an infant’s life to just 18 months. They are now trying to raise $1 million for Dr. Kaspar's SMA Gene Therapy to help cure the disease.

The blog originally started as a way to keep family informed, but slowly grew into a viral phenomenon. It now has over 2.5 million page views. A poll on the site shows over 8,500 participants did not know about SMA before seeing the blog.

Canahuati also posted the last picture he took of Avery alive and promised that archived posts will be added at a later date.



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