HOUSTON Avery Canahuati was only 5 months old when she passed away, but the baby with a bucket list left a legacy of love, courage and hope.
Avery s parents, Michael and Laura Canahuati, decided to spread the word about their daughter s rare genetic disorder through her blogand Avery's story touched hearts all over the world.
It was on the blog, that Michael confirmed Avery passed away Monday after one of her lungs collapsed and she went into cardiac arrest. Michael performed CPR and brought Avery back to life for a brief time, but she died shortly after arriving at the hospital.
Avery s passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago, her father wrote on the blog. 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.
Avery seemed perfectly healthy when she was born on 11/11/11. But within her first few months, Laura noticed her daughter wasn t progressing normally.
I just started screaming, said Canahuati in an earlier interview. It just doesn t seem real.
The diagnosis was spinal muscular atrophy, SMA Type 1. The incurable genetic disorder destroys spinal neurons. Averyhad already lost use of her legs and was beginning to lose strength and movement in her arms.
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 Michael during an interview with KHOU 11 News last month.
It was at that point that the Bellaire couple 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.
In April, 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, chronicled 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!
Avery's story helped raise nearly $700,000 for SMA research. Her bucket list goal was $1 million, but her parents will continue the effort.
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.
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.
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.
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