BELLAIRE, TX (RNN) - The baby who inspired a touching "Bucket List" blog by her parents written in her voice and documenting her fight with a deadly genetic disease has died.
She was almost 6 months old.
Avery Canahuati had been diagnosed with spinal muscular atrophy, or SMA, which leads to weakness in the muscles, eventually causing problems with swallowing, breathing and limb movement.
She died Monday afternoon.
"In short, one of her lungs collapsed and she went into cardiac arrest," her father Mike Canahuati wrote on the blog.
"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 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."
The disease kills more babies than any other genetic disease.
"While we were aware of the severity of her diagnosis, we never lost hope for Avery," he wrote.
The blog, written by Avery's dad but channeling her voice, started as a way to keep friends and family updated on her condition. Eventually, the eyes of the world began following her inspiring journey.
Written with a touching mix of humor, warmth and empathy, the blog documented Avery's final days and her father Mike and mother Laura's fight to bring awareness of the disease.
After a particularly challenging day at the hospital, Avery "wrote" on April 14:
"So yesterday is what I like to call an NFD, which means a No Fun Day. I learned to call days like yesterday NFD's instead of anything else because when leaving the hospital yesterday I said 'Today sucked! Sucked, sucked, sucked!' and my daddy immediately told me to not use bad words and that I was grounded, grounded, grounded. "
In spite of her challenges, the blog offered hope that her story could illuminate a health issue few people knew about.
"Overall, in my life as well as in my death, I want to make a difference in the lives of others."
Things Avery checked off in her short but impactful life include throwing out the first pitch at a baseball game, getting her first tattoo - a temporary Hello Kitty tat - and advocating for doctors to screen potential parents to see if they are carriers for SMA.
If both parents are carriers, there's a 25 percent chance their child will be born with the disease.
"Make sure when you tell people about me, you tell them I'm not dying, I'm living … and they should be too," Mike Canahuati wrote on his daughter's behalf.
Her parents promise to carry on their young daughter's legacy for other families fighting the same battle.
"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," Mike Canahuati wrote. "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."
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