"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," mom said. "We have all the time in the world to cry when this is over."
™ & © 2012 Cable News Network, Inc., a Time Warner Company. All rights reserved.