HOUSTON, TX (KHOU) -Avery Canahuati is only 5 months old and her doctors say, at best, she will get only 13 months more. So her parents are filling the fleeting days with as many memories as they can while taking Avery's story, and her "bucket list," online to spread the word about a rare genetic disorder.
Avery seemed perfectly healthy when she was born last November. But within her first few months, Laura Canahuati noticed her daughter wasn't progressing normally.
Click here to see photos of Avery with her family.
"I just started screaming," said Canahuati when she received her daughter's diagnosis. "It just doesn't seem real."
The diagnosis was spinal muscular atrophy, SMA Type 1. The incurable genetic disorder destroys spinal neurons. Avery has already lost use of her legs. She is beginning to lose strength and movement in her arms. As the disease progresses the atrophy is expected to rob her of the ability to breathe.
"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," said Avery's dad Michael Canahuati.
It was at that point that Michael and Laura Canahuati decided to channel their anger and grief and make memories out of every moment of their daughter's life.
"We can sit at home and we can cry every single day, or we can try to make memories with her," Michael said. "We can watch her die, or we can let her live. 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."
So earlier this month, just a few days shy of Avery's 5-month birthday, they created Avery's Bucket List, an online blog of every memorable moment the trio and their extended families share. Her story, also on her own Facebook and Twitter accounts, chronicles her life, her parents' hopes and dreams, and information on SMA.
The blog, written by her parents as if in Avery's voice, asks that people "don't forget to share my story with everyone! While it might not help me in my lifetime, the more people who are aware of SMA, the more likely there will one day be a cure for SMA!"
"Mike always told me we've got all the time in the world to cry," said Laura. "We can cry, you know, when she's no longer here. But for now we want to enjoy the time we do have with her and just make memories."
Avery's crossed-off items on her bucket list include celebrating her first Easter (complete with wearing bunny ears), her first trip to college (the campus of Texas State University in San Marcos where her parents met), her first innocent kiss (from a boy named Cooper who is also an SMA patient), to her first tea party with her mom. On Sunday the Canahuatis braved the blustery weather in southwest Houston to fly a kite for the first time.
"We didn't sit down and cry that day," said Laura of their reason for creating and chronicling daily memories. "We sat there and we made memories with our daughter.
"And lots of them," said Michael of their goal.
Research suggests that 1 in 40 people, or an estimated 7.5 million in the U.S., are carriers of the SMA gene. The Canahuatis are sharing Avery's story to encourage parents to be screened for that gene so they can be aware of the odds of passing the disorder to their children.
"I refuse to think that my daughter will die in vain," Avery's dad said of their public chronicle of Avery's final days.
For more information:
Avery's blog: http://www.averycan.blogspot.com/
Avery on Facebook: http://www.facebook.com/AverysBucketList
Avery on Twitter: https://twitter.com/#!/averybucketlist
SMA info: http://en.wikipedia.org/wiki/Spinal_muscular_atrophy
Kevin Reece, KHOU 11 News