Avery's Bucket List: Parents pen blog for baby dying of spinal muscular atrophy

KHOU

(CBS News) At only 5 months old, Avery Canahuati has already had her first kiss, her first tattoo (temporary), and her first trip to college. That's because after their daughter was diagnosed with an incurable genetic disorder and told she had only 13 months, at best, left to live, Laura and Michael Canahuati decided to launch Avery's Bucket List.

Avery seemed perfectly healthy when she was born, but eventually Laura Canahuati noticed her daughter wasn't progressing normally. Avery was diagnosed with spinal muscular atrophy, SMA Type 1, a disorder that destroys spinal neurons. Infants with SMA type I are born with very little muscle tone, weak muscles, and feeding and breathing problems. Avery has already lost the use of her legs, CBS affiliate KHOU in Houston reported. She is beginning to lose control of her arms, and may eventually lose the ability to breathe.

Spinal muscular atrophy is a group of inherited diseases that cause muscle damage and weakness, which worsen over time and eventually lead to death. There are four types of SMA. SMA Type 1, also called Werdnig-Hoffman disease, is the most severe.

"When they tell you your daughter will most likely die within the next 18 months of an incurable disease, that there are currently no clinical trials for, and that it's the number one genetic killer of infants, it pissed me off," Avery's dad Michael Canahuati told KHOU.

"I just started screaming," Laura Canahuati said. "It just doesn't seem real."

Instead of wallowing in sadness, Avery's parents decided to make the most of the time she has. "We can watch her die, or we can let her live," Michael said. "And through letting her live we're going to try and educate other people about this so they don't have to go through it too."

Avery's blog, "Avery's Bucket List," created by her parents but written in her voice, has received over 100,000 page views (one item on the bucket list) and has more than 4,000 followers.

On the blog, Avery writes, "I have a lot of living to do in just a little bit of time and I'm going to need all the help I can get." Items on the bucket list range from riding a horse to visiting the White House to getting married. "Nothing is too crazy and trust me when I say this, if you can dream of it for me, my mommy and daddy will find a way to make it happen," Avery "says" on the blog.

"I refuse to think that my daughter will die in vain," Avery's dad said.

SMA affects about 4 in 100,000 people. In most cases, the affected patient receives a defective gene from both parents.

Families of SMA has more on spinal muscular atrophy.

[c_green269]

Has anyone tried medical marijuana?

[dessared]

I got up this morning reading this i have 3 littie girls that also watched it with me .we are so sorry for your hard loss its not far to take are babys, as parents we are the ones that are supost to be taken 1st, im so so sorry again for your loss.

[RonFightSMA]

To the parents of Owen, I greatly appreciate you sharing some encouraging news about your son, Owen. Obviously, with the terrible news of Avery's passing, we're all grieving with her parents and so sorry for their loss. At the same time, I know and have met parents of children with Type I SMA who are living their lives and their children are providing joy to their families. Unfortunately, without a cure, it is true that SMA is the leading genetic cause of death for children two years of age and younger. Most people don't know that, but that's a fact. Your story gives parents hope, and speaking for my organization, FightSMA, in Alexandria, Virginia, we are making progress. A few weeks ago, we had our annual research conference in Washington, DC, and one of the most frequent comments from parents and researchers was, "I can't believe how many more talented researchers are involved in finding an effective treatment and a cure for SMA in just the past 10 (5-15) years." That's very encouraging, and as more people become aware of SMA, I believe we will reach our goal as an organization, "we'll support the families, fund promising research, and work through legislative channels to find a cure for this terrible disease." Thank you again for your encouraging words to the other families out there, and God bless you, your son, Owen, and your family.
Ron Imbach, FightSMA

[MsBlades]

So sad...little Avery passed away the day this story came out.

[useraccount101]

I don't get it, wth is a bucket list??? Will someone please explain what's the point of this is and what is it that these parents are trying to do? Thanks.

[MsBlades]

The Bucket List, theres a movie too, is about doing all the things you want to do before you die. (kick the bucket)

[Mcph0021]

My son Owen is 10 months old and was diagnosed with SMA type one as well, what doctors fail to mention is that with respitory help and a special diet children with SMA are living much longer. I know kids that are 8, 9, 21, etc... With type 1. We were told that Owen would only live till he is 2 but he is doing excellent and hasn't had a hospital stay at yet. Please everybody try to read about this terrible disease and if you are thinking about any charity to donate to maybe you could donate to one for spinal muscular atrophy. Www.fsma.org. Or www.smafoundation.org. Are just a few. spinal muscular atrophy is on the brink of a cure with a bunch of promising trials going on right now, but they are lacking funding because no one has heard of this disease. Thanks