BELLAIRE, TX (CBS News)--Avery Canahuati, a baby who inspired countless readers as she raised awareness while struggling with a rare disease, has died. Her father Michael wrote of his daughter's passing on the blog he and his wife had created for her, "Avery's Bucket List."
Avery's Bucket List: Parents pen blog for baby dying of spinal muscular atrophy
The blog, written in Avery's voice, encourages readers to share the story and to raise awareness about spinal muscular atrophy (SMA). The newest post was introduced by Avery's dad, who said one of her lungs had collapsed and she went into cardiac arrest on Monday afternoon. Her father performed CPR and brought her back to life for a brief period of time before she passed away shortly after arriving at the hospital. Avery's doctors had initially said the 5-month old girl may live as long as 18 months.
"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," her father wrote. "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."
HealthPop reported yesterday that her parents decided to create the bucket list to make the most of her time alive and to spread awareness on the rare disease with no treatment yet.
"We can watch her die, or we can let her live," her father Michael said. "And through letting her live we're going to try and educate other people about this so they don't have to go through it too."
At 5-months-old Avery was able to scratch many items off her bucket list: The girl got her first kiss, a tattoo (temporary), her first trip to a baseball game, and other milestones aimed at spreading SMA awareness and encouraging parents to get screened for the SMA gene.
The father's post follows with a note that Avery "wrote" to her parents when the blog first started, but made them promise not to open until the time was right.
"When I started writing my blog, I thought I'd only be speaking to my closest friends and family members," the note reads. "Little did I know so many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA."
Avery seemed perfectly healthy when she was born on 11/11/11, CBS affiliate KHOU in Houston, reported, but within the first few months, her mother Laura noticed Avery wasn't progressing normally. She was then diagnosed with SMA Type 1. Spinal muscular atrophy is a group of inherited diseases that destroy spinal neurons causing muscle damage and weakness, which worsen over time and eventually lead to death. SMA Type 1 is considered the most severe form of the disease, with a life expectancy rarely longer than 2 to 3 years, according to the National Institutes of Health. About 4 out of every 100,000 people have SMA.
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