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Friday, April 27, 2012

Dying baby Avery's bucket list

Beautiful and adorable 5-month-old daughter Avery Lynn Canahuati has a rare and incurable genetic disorder.
She's such a cutie!!

Avery and Mom - Laura

Avery was diagnosed with spinal muscular atrophy, a genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Avery's was Type 1, the most severe kind, and doctors told her parents, Laura and Mike Canahuati of Houston, that their little girl had only 18 months to live.

"We had several days of sitting in shock and crying and then we pulled ourselves out of that," Laura said. "Since we had such a short time, we knew we wanted to make the best of it."
 To cherish every moment with Avery, the Canahuatis created " Avery's Bucket List," a blog written from Avery's perspective where they chronicle her world and track their family adventures, checking things off from the bucket list as they go.

The bucket list includes milestones in every child's life - from sitting up, kissing her mom and dad, to having a birthday party, meeting Santa Claus, losing a tooth, visiting college and more.
Avery's story and bucket list has struck a chord online. Since the Canahuatis started the blog earlier this month, it has racked up close to 500,000 page views, Mike said, with people as far as Malaysia, Hong Kong, Germany and New Zealand visiting it.
"When we saw how many people it was reaching in a few days, that's when we realized we could really get the word out on SMA and spread the word as much as we could," said Laura, who worked as a kindergarten teacher before giving birth to Avery, an 11-11-11 baby.
SMA is the No. 1 genetic killer of children under the age of 2 in the U.S., but most people don't know about it, Laura explained. An estimated one in 40 people are carriers of SMA. If both parents are carriers, like Laura and Mike are, there's a 25 percent chance of their child having SMA.
Laura and Mike urge all parents to talk to their OB GYNs and get tested to see if they are a carrier for SMA.

Avery has already lost the ability to move her legs. She can barely move her arms and doctors say eventually she will be unable to move her head or breathe without the help of a respirator. Last week, she had a G-Tube put in so she can be fed through a line in her stomach and her parents constantly monitor her oxygen levels since babies with SMA have difficulty regulating their breath.
Courtesy Laura and Mike Canahuati

While her parents know Avery won't be able to fulfill many of the rites of passage that are on the list, they are finding joy in what their baby can do - tasting solid foods, taking a "big girl bath," flying a kite and blowing bubbles - and are finding a way to share in some of the later milestones with her now.

Click on the link below to follow Avery's adventures.


Baby Avery succumbed to the disease yesterday.

May her innocent soul rest in Peace..Amen!


Deyinka Onabanjo said...

Dis is so sad,I cnt bliv tears re rollin dwn my cheeks. If only God cud spare her life.

2go tweaks for updating status said...

Please Lord, i pray for God's divine love for this baby.
mtn cheats and tweaks.

Deyinka Onabanjo said...

Vera where are you oooo,baby Avery is dead oooo*crying* its rili sad may her soul RIPP.

Vera Ikeji Shilobod said...

My dear I just read it o, I didnt know she died until I came home from work and logged in. May her beautiful soul rest in peace...Amen!

Deyinka Onabanjo said...