Baby with 'bucket list' dies

8:51 PM, May 1, 2012   |    comments
Avery Lynn Canahauti (Courtesy of http://averycan.blogspot.com)
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(CNN)-- The 6-month-old girl whose parents created a "bucket list" blog for their daughter after doctors said she would not live past age 2 died Monday, her father said.

Avery Lynn Canahuati, who was born in November with spinal muscular atrophy type 1, died of pulmonary complications related to the genetic disorder, Mike Canahuati said on the blog Tuesday.

"In short, one of her lungs collapsed and she went into cardiac arrest," said Canahuati, 31, of Bellaire, Texas. "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 doctors appointment only three days ago," her father wrote Tuesday. "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."

The infant's parents had written the blog as though Avery would make it past age 2 and experience life's milestones as a healthy girl.

Canahuati wrote Monday that there were two items he could now scratch off Avery's "bucket list":

1. Not let SMA take my smile away.

2. Take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George and all my great-grandparents.

He published the last photo the parents took of Avery, which he said showed her "sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying 'Hi.' "

The blog began as an efficient way to keep family and close friends in touch about their baby's health. But when the father came upon the idea of writing a "bucket list" for his Avery -- a list of things to do before death, normally drafted for adults -- his blog went viral and now has 2.4 million page views.

The "bucket list" is so sensitively penned that many of his readers are convinced that it's mom, not dad, typing the entries, he said.
"A lot of people, when they post on there, they say, 'you and your husband.' They obviously assume Laura is writing it," he said.

The bucket list's entries are lighthearted, humorous and decidedly hopeful, though Avery had the worst order of an incurable disease caused by a genetic defect that attacks the muscles, especially the respiratory system. Only type 0 is worse, but that usually occurs with fetuses, the couple said.

One in 6,000 babies is born with one of four types of SMA, according to the Canahuatis, whose daughter was diagnosed on Good Friday. One in 40 people is a carrier of the gene, and the Canahuatis had a one in 1,600 chance of both being carriers -- which they believe they are, the couple said.

Writing in the first person as if his daughter were the author, Canahuati created new bucket list entries during the week on the family's averycan.blogspot.com website or their "Avery's Bucket List" Facebook page. 

They included:

1. Wake up smiling.

2. Have a bad hair day.

3. Ride in an ambulance.

4. Get picked up by a fireman.

5. Meet a fan.

6. Talk to mommy & daddy.

7. Eat a cupcake & a Blow Pop.

8. Play with Play-Dough.

9. Play a practical joke on someone.

For more about Avery and SMA, visit her blog

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