'Bucket list' baby Avery Canahuati dies

The baby behind the inspirational 'bucket list' that went viral online has died.

Five-month-old Avery Canahuati was suffering from a rare genetic disorder called spinal muscular atrophy (SMA), and was given a life expectancy of less than two years.

Her parents, Mike and Laura Canahuati, wrote a bucket list of things for her to accomplish before she died.

Before she passed away, she had already accomplished several things off the list, including: throwing the first pitch at a baseball game, gone on a road trip, been a cheerleader, had a birthday party, driven a car, and opened a birthday gift from a stranger.

However, many more things left on her list went unanswered.

On Monday, her lung collapsed and she went into cardiac arrest in the afternoon, Mike wrote on the blog he keeps to update loved ones on her condition.

He tried performing CPR on her and it worked, bringing her back to life for a short while. However, her breathing stopped soon after.

He wrote on Tuesday that Avery passed away sometime around 3pm on Monday, shortly after arrival at the hospital, due to pulmonary complications related to SMA.

"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," he 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," he added.

Babies with severe types of SMA - like Avery, who has Type 1 SMA, with Type Zero being the worst - have difficulty regulating their breath and are especially at risk of respiratory complications.

In his last posting, he shared the last photo the family ever took of Avery, showing her smiling. According to Mike, the disease, terrible as it may be, never took Avery's smile away.

The picture had been taken approximately 15 to  20 minutes before her lung collapsed and she went into cardiac arrest.

"She was sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying "Hi," he said.

Even in her death, Avery managed to strike items off her list, her father wrote.

The final items Avery was able to strike off her bucket list:

1. Not let SMA take my smile away 2. Take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).

Her inspirational story

Her 'bucket list' story which touched millions

Baby Avery was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on a Good Friday, June 4, 2012.

This meant that little Avery, who had already lost her ability to move her legs by the time she was five months old, would have eventually lost the ability to move her arms and her head.

Soon, it would have become increasingly difficult, and in the end impossible, for her body to pump air through her lungs.

This is why most babies diagnosed with SMA Type 1 have a life expectancy of less than two years of age.

Even with the help of a respirator, life expectancy can only be stretched till ten years of age. One in 6,000 babies is born with one of the four types of SMA..

Faced with the reality that their five-month-old daughter was diagnosed within an incurable genetic disease, Mike and Laura chose to write a blog in her name, written in the voice of a five-month-old battling the terminal illness.

Much of the blog, written in the first person in Avery's voice, is the work of the father, Mike.

He wrote: "My mommy, daddy, and grandparents have chosen to help me fight this disease, while embracing this news and helping me chronicle my "bucket list" experiences through this blog.

"So at this point, my family & friends can either sit back and watch me die and let my life be about doctors visits and tear filled days, or everyone can embrace what my future holds and we can make each day I'm here a memorable one...starting now."

The bucket list was written as though Avery would live far beyond her estimated life expectancy and experience life's milestones, such as:

  • Attending a sleep over
  • Going hiking
  • Play dress up in my mommy's closet and have a photo shoot
  • Celebrate my real 1st birthday
  • Lose my first tooth and get a present from the tooth fairy
  • Meet Santa Claus Dress up for Halloween and go trick or treating
  • Get a tattoo

In April 2012, in the last post before her death, her father wrote that Avery even got to throw the first pitch at a Sugar Land Skeeters baseball game.

During the game held in honour of SMA awareness, Mike got to strike off several more items off the list, including:

  • "1. Go to my first baseball game
  • 2. Throw out the first pitch at a baseball game
  • 3. Throw a strike...whatever that means
  • 4. Have thousands of people cheer for me at once
  • 5. Shake hands with super hot baseball players
  • 6. Meet some of my SMAns"

Living with SMA

Living with SMA

Despite the cheery picture the posts paint, the Canahuatis had a difficult Easter weekend when they tried to come to terms with their baby's fatal disorder.

Laura said the family sat around for two days crying and "being devastated".

They had to absorb the cruel news that there was no cure and absolutely nothing they could do to help her, and accept the fact that Avery's fate was out of their hands and not within their control.

On April 26, the couple had to send Avery to the hospital when her oxygen levels and heart beats per minute went 'crazy', triggered by milk being fed to her too much and too fast.

This caused major reflux issues and affected her swallowing and breathing.

However, the Canahuatis, in their signature optimistic style, took the best view of the situation, writing that Avery "got to ride in an ambulance with two muscular firemen who wouldn't take their eyes off of me."

SMA is the top genetic killer of infants and children under the age of two.

However, most people remain ignorant of it and medical institutions rarely offer tests for it.

According to the couple living in Bellaire, Texas, near Houston, it's not even included when performing genetic pre-screening tests for other potential diseases and disorders.

And while some insurance companies cover the testing costs, others don't.

One in 40 people are carriers of the SMA gene. Meaning that each couple has a one in 1,600 chance of both having it, and a one in 6,400 chance that the baby will be born a sufferer.

Go for SMA testing

Call for couples to get SMA testing

In each post, including the last, they add a plea for readers to share Avery's story in the hope of spreading SMA awareness.

In her voice, they call on couples to get SMA testing, and medical organisations and insurance companies to offer SMA testing, so nobody has to go through what Avery's family is going through every day.

"The only way to do this is to make people aware of SMA so they know they have the OPTION of getting tested for it. That's all I want and that's all my mommy & daddy want for me and all of my future friends," 'Avery' wrote.

Since the 31-year-old first time father started penning the blog for his daughter, the blog has gone viral, accumulating more than a million page views and counting.

In his last post, Mike write a shout out to everybody who loved Avery and supported them, and expressed hope that they will continue to support Avery's fellow sufferers of SMA out there.

"Tell everyone who loved me that I love them and I appreciate them caring about me," he wrote in Avery's voice.

Before Avery was diagnosed, Mike and Laura were totally in the dark about the disease, yet there are thousands of SMA sufferers out there living with it, and millions of future parents who are unknowingly carriers of the SMA gene.

"Without awareness and without a cure, I'm afraid more of my friends are at risk to have their lives drastically shortened by SMA," 'Avery' wrote.

Mike says he will continue to carry on writing Avery's story in the blog, saying before she died, he promised her he would continue being an activist in raising SMA awareness, making genetic testing universally available and in finding a cure for SMA.