After Laura and Mike Canahuati of Houston, T.X. received the call from their neurologist which confirmed their worst fear: their little girl had been diagnosed with spinal muscular atrophy and had a mere 18 months to live. This is when the Canahuatis created "Avery's Bucket List," a blog composed of their daughter's adventures, written from her perspective, which includes a list of things to do before she kicks the bucket.
After the neurologist confirmed Avery's test results at 3:30 p.m. on Good Friday, indicating that she was suffering from a genetic disorder that attacks spinal neurons and increasingly debilitates muscle function, Type 1 spinal muscular atrophy, Laura was quoted having said:
"We had several days of sitting in shock and crying and then we pulled ourselves out of that. Since we had such a short time, we knew we wanted to make the best of it."
Mike Canahuati, 31, was quoted having said:
"We have our days, it's not that we don't. The blog made it into ... Let's go to the Canahuatis and smile at Avery and appreciate life instead of crying."
"I have a lot of living to do in just a little bit of time. In everything I do, the two most important things are that I’m spending time with my mommy & daddy, while at the same time spreading awareness for SMA."
Spinal Muscular Atrophy (SMA) is the top genetic killer of children under the age of 2 in the United States, but most people are unaware of the incurable genetic disorder, ABC News reports.
After already losing the ability to move her legs, young Avery Lynn Canahuati, who was born 11-11-11, is currently struggling to move her arms. Doctors have conveyed that she will eventually lose the ability to move her head or breathe without the assistance of a respirator. She is currently being fed through a G-Tube, a line in her stomach, as her parents constantly monitor her levels of oxygen as babies suffering from SMA have trouble with breathing regulation.
Mike and Laura hope that their daughter's story will help raise awareness for the disease and aid in the discovery of a cure. Laura was quoted having said:
"No one should have to go through this."
The blog, which can be found at http://averycan.blogspot.com/, states that "Avery" is seeking to raise over $1 million in donations towards a cure for the genetic disorder that is spinal muscular atrophy.
Avery's Bucket List Video: