‘Avery’s Bucket List': A Five-Month Old with Spinal Muscular Atrophy Gets Busy Living

Over her short five-month life, Avery Canahuati was destined to make every day count.

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Over her short five-month life, Avery Canahuati was destined to make every day count. She even made brisk progress on a rather inspirational bucket list. Already, she’s thrown out the first pitch at a baseball game, got a tattoo and had her first kiss. And she’s blogging about it all.

It’s hardly any matter that Avery is just five months old.

OK, it’s really Avery’s father Michael doing the typing, but there’s something incredibly touching about the way that Avery appears to narrate it all. If you’ve ever wanted to re-experience life through a child’s eyes, you could do no better than little Avery’s optimistic blog. It’s already attracted millions of fans, who tune in for Avery’s latest adventure, like her recent baseball excursion: “Daddy is making me say the mascot was a real pest and he kept bugging us…ugh he’s sooooo cheesy and such a dork.”

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On April 6, Avery’s mother and father discovered that their daughter was diagnosed with a devastating, incurable disease called Spinal Muscular Atrophy. Avery was found to have SMA Type 1, the most severe type; doctors explained to her parents that she likely wouldn’t live to see her 2nd birthday.

“We’d never heard of this. Nobody we knew had ever heard of this, and yet it’s the number one genetic killer of infants in the United States,” Michael Canahuati told MyFoxHouston.

Avery’s debilitating illness is slowly robbing her of her faculties, first taking away her ability to move her legs and expected to soon leave her arms immobile. Eventually, her lungs will stop working, resulting in her death. But while Avery is still able, her parents Michael and Laura, from Bellaire, Tex., are attempting to fit as many pivotal experiences as possible into her brief life. “We can watch her die, or we can let her live,” her father told KHOU.

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While little is known about SMA, the crushing fact is that Avery’s disease could have been caught before birth. Her mother is a carrier of the SMA gene but was never tested. So the Canahuatis are using the blog to bring awareness to the disease and encourage prenatal testing to prevent other children (and parents) from suffering the same physical and emotional devastation.

The last item on anyone’s bucket list should be the one that proves the toughest task, but with the greatest reward. Sadly, Avery’s final task might just prove insurmountable: to overcome the illness. Even if the final task can’t be crossed off, the Canahuatis have created innumerable memories with their daughter – and they’ve inspired millions of others to do the same.

UPDATED: 5/1/12, 1 p.m. Devastatingly, little Avery passed away on April 30th, just hours after we published this story. She went into cardiac arrest and her father’s attempts at CPR were unsuccessful. But her father writes optimistically on the blog: “We never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends.”

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