Couple makes ‘bucket list’ for their baby with fatal illness
BELLAIRE, Tex. — 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.
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.
“We want her to try cupcakes, ice cream, go to a birthday party, fly a kite, blow bubbles,” Laura Canahuati said.
“Then we started getting massive amounts of e-mail and people said, ‘Hey, add this to the bucket list, add this, add this,'” she said.
Mike Canahuati’s other writing on the blog is playful, such as Saturday’s posting:
“Today started like most days, I woke up, ate breakfast through my glam-tube, took a bath, and then checked my blog to see if anyone is reading my story and helping me spread awareness about SMA. Well, when I woke up yesterday I had 480,000 pageviews and as of right now I have 1.29 million pageviews (and that number is increasing by about 2.5 pageviews per second). Holy…Shitake mushrooms??? Umm, I’m not certain, but I believe they are with the rest of the produce sir. Ugh sorry, do I look like work here? Anyway, where was I?”
Mike Canahuati said he conjures up a little girl’s perspective when he writes.
“There’s no rhyme or reason to it,” he said. “I don’t know what it’s like to be a little girl but I have a bunch of sisters,” he added, the only boy in his family with three older sisters.
Despite the humor, the Canahuatis say it was a difficult Easter weekend when they coped with the news of their baby’s fatal condition.
Laura Canahuati recalled “sitting around for two days crying and being devastated, since there is no cure and there is nothing we can do right now.
“We asked our doctors specifically if there is anything. Is there trial drugs, anything out of the country? There is absolutely nothing to help her disease,” she said. “That’s when we both sat down, and we know it’s out of our hands and it’s out of our control.”
The Canahuatis are using their blog, Facebook page and a Twitter account — the latter two being written with the help of family and friends — to raise public awareness about SMA, including encouraging couples to get tested on whether they are carriers of the gene. The Canahuatis learned that some insurance companies cover the testing costs and others don’t.
They are carrying out such a campaign with a spirit of gratitude, if not private hope that Avery’s prognosis could improve. Mike Canahuati owns an insurance agency, and Laura Canahuati, 29, is a public school kindergarten teacher at Hope Elementary in Bellaire, who’s now taken a leave of absence to care for her daughter. In 2006, Mike Canahuati came up with an idea to start a cancer nonprofit group called Insure the Cure because both his parents died of cancer by the time he turned 20.
“I try to not overload with too many facts about SMA,” Mike Canahuati said. “I try to keep it as fun and lighthearted as possible within the realm that this is serious, trying to make people understand what is SMA and what my wife, my daughter and everyone who loves us is going through.
“It’s making people realize, ‘Hey, my life is not that bad, I need to go hug my kid and I need to do something nice for my wife or my kid,'” he said.
The couple are going to spend the next 18 months enjoying what time they have with their baby, who was born on November 11, but whose legs now don’t move at all and her arms are showing less movement because of the disease.
“We could go around and cry all day long or we can enjoy the time we have with her,” her mother said. “We have all the time in the world to cry when this is over.”