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Nervous System Health

Parents' create 'bucket list' for baby daughter with fatal disorder

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Avery CanahuatimyFOXhouston

A Texas family has created a 'bucket list' for their infant daughter after learning she suffers from a fatal genetic disorder, myFOXhouston reported.

Mike and Laura Canahuati, from Bellaire, Tex, are on a mission to teach the world about their daughter Avery's fatal genetic disease. You've likely never heard of Spinal Muscular Atrophy, but 7.5 million Americans carry the gene that causes it.

Doctors have given Avery just 18 more months to live.

"Nothing will ever be the same as far as what's important," said Laura Canahuati, Avery's mommy.

"I don't want my daughter to die in vain, and I feel like if someone doesn't tell her story that's what's going to happen," said Mike Canahuati, Avery's daddy.

The couple's only child was born smiling and healthy on the luckiest of days, 11-11-11.

"I had hands down one of the easiest pregnancies, very easy delivery," said Laura.

They had no clue that five months later, on Good Friday, Avery would be diagnosed with the crippling and incurable genetic disease known as SMA Type 1, the most serious.

"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," said Mike.

SMA attacks nerve cells, gradually weakening the muscles.

Avery's mind is intact, but she can no longer move her legs or hold up her head. Eventually she won't be able to breathe without the help of a machine.

"We looked at each other and said, 'Well, we can do one of two things. Crawl into a hole and die with her, or we can stand here, face each other, face her and live life," said Mike.

In their most painful hours, Laura and Mike made a choice. Avery's life wouldn't be defined by suffering, but by the word her name is found in, "BrAvery."

And so Avery's Bucket List was born, an online blog written by Mike in his daughter's point of view.

"The reason I thought of it to begin with is because I wanted to see my daughter get married. It's the one thing I had in mind. From there it snowballed to let's see her brush her teeth, let's see her sit up, let's see her smile, kiss us, hug us," said Mike.

The Canahuati family hopes Avery's story will inspire future parents to ask to be tested for SMA and encourage doctors to work toward a cure.  In the mean time, they said they hope to enjoy the time they have left with Avery, creating as many memories they can.

Click here to read Avery's blog.

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