"Bucket List" baby Avery Canahuati dies

CBS KHOU

(CBS News) Avery Canahuati, a baby who inspired countless readers as she raised awareness while struggling with a rare disease, has died. Her father Michael wrote of his daughter's passing on the blog he and his wife had created for her, "Avery's Bucket List."

Avery's Bucket List: Parents pen blog for baby dying of spinal muscular atrophy

The blog, written in Avery's voice, encourages readers to share the story and to raise awareness about spinal muscular atrophy (SMA). The newest post was introduced by Avery's dad, who said one of her lungs had collapsed and she went into cardiac arrest on Monday afternoon. Her father performed CPR and brought her back to life for a brief period of time before she passed away shortly after arriving at the hospital. Avery's doctors had initially said the 5-month old girl may live as long as 18 months.

"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. "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."

HealthPop reported yesterday that her parents decided to create the bucket list to make the most of her time alive and to spread awareness on the rare disease with no treatment yet.

"We can watch her die, or we can let her live," her father Michael said. "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."

At 5-months-old Avery was able to scratch many items off her bucket list: The girl got her first kiss, a tattoo (temporary), her first trip to a baseball game, and other milestones aimed at spreading SMA awareness and encouraging parents to get screened for the SMA gene.

The father's post follows with a note that Avery "wrote" to her parents when the blog first started, but made them promise not to open until the time was right.

"When I started writing my blog, I thought I'd only be speaking to my closest friends and family members," the note reads. "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."

Avery seemed perfectly healthy when she was born on 11/11/11, CBS affiliate KHOU in Houston, reported, but within the first few months, her mother Laura noticed Avery wasn't progressing normally. She was then diagnosed with SMA Type 1. Spinal muscular atrophy is a group of inherited diseases that destroy spinal neurons causing muscle damage and weakness, which worsen over time and eventually lead to death. SMA Type 1 is considered the most severe form of the disease, with a life expectancy rarely longer than 2 to 3 years, according to the National Institutes of Health. About 4 out of every 100,000 people have SMA.

Avery's Bucket List can be found here.

Families of SMA has more on spinal muscular atrophy.

[dkinsel]

My prayer will be with you each morning! I am happy that you got to spend some time with Avery. She is a beautiful baby. God bless you.

[fortuenti]

Just when I think how much my life sucks and how miserable I am, stories like this come along and I think "what did these people do to deserve THIS?"

[FormerUSMCSergeant]

by knewsterrrrr May 1, 2012 11:48 PM EDT

He revives it when there is no cure...
---
I have seen you post some insensitive, to say the least, comments here in the past.

But you show you have not one iota of compassion with this.

I would refer to you as a miserable human being if I thought there was anything human about you.

[meman3]

FormerUSMCSergeant says:
by knewsterrrrr May 1, 2012 11:48 PM EDT

He revives it when there is no cure...
---
I have seen you post some insensitive, to say the least, comments here in the past.

But you show you have not one iota of compassion with this.

I would refer to you as a miserable human being if I thought there was anything human about you. WHAT THE HELL DID I SAY FOR YOU TO MAKE THIS COMMENT???????

[blutruffle]

Thank you for sharing your precious little girl with all of us. We were all blessed to know of Avery's life. And Avery was blessed with the parents she chose

[themooniac]

Best of luck to you girl in your next life.

[galvet]

My heart is breaking for that sweet little girl and her family.

[jonpaul65]

Another little angel in Heaven! Her parents are to be commended for all that they did these last few weeks of her life.

[rwsmith29456]

Poor little thing. Poor parents. Heartbreaking.

[kissdoll66]

i would like to express my deepest condolences to Avery's parents i too lost a child 3 years ago so i know your pain. but i also am deeply saddened by Avery's passing she brought such light to my little world following her adventures has been awesome please know that there are so many people who are greiving your loss with you Avery touched so many in her short time here she was and always will be a precious angel my love and prayers to you and your family and to Avery thank you for the adventures and so many will be missing you

[seadair508]

Would like to express my deepest sympathys to the family. My prayers are with them