by Cassandra R. Elias
No sooner had the story of this sweet baby girl's terminal condition gone viral, but her already expected short life was suddenly cut even shorter. Avery Canahuati died yesterday at the age of five months.
Avery seemed perfectly healthy when she was born November 11, 2011. But within her first few months, her mom noticed she wasn't progressing normally and had her checked out.
The diagnosis was spinal muscular atrophy, SMA Type 1. SMA is an incurable genetic disorder which destroys spinal neurons. At that point, Avery had already lost use of her legs and was beginning to lose movement and strength in her arms.
Dad Michael told KHOU News last month, "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."
The couple decided they would channel their grief and anger and make the most of every moment their baby girl had left and make memories.
Michael said, "We can sit at home and we can cry every single day, or we can try to make memories with her." 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."
In April, just a few days before Avery officially turned five months, they created "Avery’s Bucket List," an online blog of every memorable moment they and their extended families would share.
The blog was written in Avery's voice and asked 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!"
They also chronicled her story on Avery’s own Facebook and Twitter accounts.
Avery’s crossed-off items on her bucket list included 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), her first tea party with her mom and throwing out the first pitch at the Skeeters game last weekend.
"Mike always told me we've got all the time in the world to cry," Laura said in April. "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."
Given that Avery was given an approximate life expectancy of 18 months, her sudden passing came as a shock.
Michael wrote that, "she had just been given a thumbs up at her last doctor's appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends."
We send our deepest condolences to the amazing family of this beautiful little girl. We invite you to leave your comments below.
Photo Courtesy of Mike and Laura Canahuati