Couple Pens ‘Bucket List’ for Baby with Fatal Illness
(CNN) — 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
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 one in
1,600 chance of both being carriers — which they believe they are, the
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
“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
“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,’”
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
“We could go around and cry all day long or we can enjoy the time we
have with her,” mom said. “We have all the time in the world to cry when
this is over
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