Bucket List baby Avery dies

Little Avery Lynn Canahuati, the 5-month-old girl with Spinal Muscular Atrophy who captured everyone's hearts on the Internet for her bucket list, died yesterday, her family announced on her blog.

It's so sad that this precious baby left this world suddenly. On April 6th, her Doctors told her parents that she had 18 months to live so what happened?? Yesterday was April 30th.

Baby Avery's lung collapsed yesterday afternoon and she went into cardiac arrest, I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital," her father, Michael Canahauati wrote in an update on her blog, Avery's Bucket List. Babies with severe types of SMA have difficulty regulating their breath and are especially vulnerable to respiratory complications.

"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 doctor's appointment only three days ago," Mike Canahauati wrote in a blog post today. "While we were aware of the severity of her diagnosis, we never lost hope for Avery."

Her father wrote that the disease never took away Avery's smile and he shared a photo of Avery smiling before she was rushed to the hospital on Monday.

Baby Avery with her parents Laura and Michael

In her final post, written by her father, Avery writes: "When I started writing my blog, I thought I'd only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA."

To cherish every moment with their daughter, the Canahuatis, from Bellaire, Tex., created "Avery's Bucket List," a sweet and joyful 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.

Recently, Avery threw out the first pitch at a minor league baseball game in Houston, got a tattoo, a driver's license and had her first kiss with a cute little boy.

One of the things on her bucket list was to raise $1million for kids with SMA, so far they have raised $365,000 which her parents said they would use to help babies with SMA.

Written in Avery's voice and infused with humor, the blog attracted millions of views online - from as far away as Malaysia, Hong Kong and Germany - as her story and message was shared through the SMA community, on Facebook and other social networking sites.

May her beautiful soul rest in peace..Amen!!

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.
http://averycan.blogspot.com/

UPDATE:

Baby Avery succumbed to the disease yesterday.

May her innocent soul rest in Peace..Amen!