Monday 30 April 2012

Texas couple pen a 'bucket list' for their baby with fatal illness

Texas couple pen a 'bucket list' for their baby with fatal illness

Mike and Laura Canahuati's blog about their nearly 6-month-old daughter, who is expected to die by age 2 because of a genetic disorder, began as an efficient way to keep family and close friends in touch about baby Avery's health. But when Mike Canahuati came upon the idea of writing a "bucket list" for his infant child -- a list of things to do before death normally drafted for adults -- his blog went viral, now with more than 1 million page views. His imagined "bucket list" -- written as though Avery will make it past age 2 and experience life's milestones as a healthy girl -- is so sensitively penned that many of his readers are convinced that it's mom, not dad, typing the entries, said 31-year-old Mike Canahuati, of Bellaire, Texas, near Houston.

"A lot of people when they post on there, they say 'you and your husband.' They obviously assume Laura is writing it," dad said. Read the Canahuatis' blog The bucket list's entries are lighthearted, humorous and decidedly hopeful, though Avery has Spinal Muscular Atrophy Type One, the worst order of an incurable disease caused by a genetic defect that attacks the muscles, especially the respiratory system. Only Type Zero 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 are carriers of the gene, and the Canahuatis had a 1-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 is the author, Mike Canahuati creates new bucket lists during the week on the family's averycan.blogspot.com website or their "Avery's Bucket List" Facebook page, such as this one:
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

The lists imagine the parents living out a normal life with Avery through her teen years and beyond.

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