'Avery's Bucket List': Five-Month Old Girl With Spinal Muscular Atrophy Dies

View photo

.

Courtesy of Mike and Laura Canahuati

Avery Canahuati, the five- month-old girl with spinal muscular atrophy whose inspirational "bucket list" went viral online, died Monday of pulmonary complications from the disease.

The little girl's lung collapsed and she went into cardiac arrest Monday afternoon, 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 Monday.

On April 6, Avery was diagnosed with Type 1 SMA, or the most severe type of spinal muscular atrophy, an incurable, genetic disorder that attacks spinal neurons and progressively debilitates muscle function.  Having Type 1, doctors gave Avery 18 months to live.

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.

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.

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."

SMA is the No. 1 genetic killer of children under the age of 2 in the U.S., but many people don't know about it, Laura Canahuati explained in an interview before Avery's death.  An estimated one in 40 people are carriers of SMA. If both parents are carriers, there's a 25 percent chance of their child having SMA.

The Canahuatis urge all parents to talk to their obstetricians and get tested to see if they carry the gene for SMA.

One of Avery's newest bucket list goals before her death was to raise $1 million towards SMA research and her parents wrote today that they want to help raise the remaining $365,000 for Avery's "SMA friends."

"Before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends," Mike Canahauti wrote. "I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery's Bucket List and help her complete items she was unable to."

Research for treatment and a cure for SMA has come a long way over the last 10 years. Early clinical trials are underway, including the first ever trial for a drug designed specifically for SMA, according to Kenneth Hobby, president of the Families of SMA, an organization which funds research initiatives. Additional funds are devoted to promising gene therapies and ways to manage the symptoms. Currently, those with SMA Type I rarely live longer than 2 to 3 years.

While Avery did not cross off many items on her bucket list, her family hopes their daughter's story will raise awareness for the disease and help find a cure.

Visit Avery's blog here

Visit Avery's Facebook page here

View Comments (5426)

Recommended for You

  • 2 Trains Collide in Germany, 4 Dead, 100 Injured

    Two morning commuter trains have collided in Bad Aibling in southern Germany, killing four people and injuring more than 100 others, police said.The train manufacturer, Meridian released a statement in German, saying two trains collided just after 7am local time.There is no detail on the condition…

    Good Morning America37 mins ago
  • Panda Cub Bei Bei Climbs a Tree With the Help of His Mom

    Bei Bei is moving up in the world.The Smithsonian National Zoo’s baby panda experienced the outdoors for the first time last week and now the nearly six-month-old cub is scaling trees—-with the help of his mom Mei Xiang, of course. The Washington DC based Zoo posted a video of the feat online this…

    Good Morning America
  • Countdown to New Hampshire With 5 Things to Watch in Tuesday's Primary

    Tuesday will be a critical moment on the road to the White House as residents of the Granite State cast their votes in the first-in-the-nation primary. With independents making up more than 40 percent of the electorate, the New Hampshire primary can often surprise, and that may be the case…

    Good Morning America
  • Royal Caribbean Cruise Ship Rocked by Hurricane-Force Winds Heads Back to New Jersey

    A Royal Caribbean cruise ship that was rocked by hurricane-force winds overnight is sailing back to port in Bayonne, New Jersey. The ship left from Cape Liberty, New Jersey, on Saturday for a seven-night cruise to the Bahamas. The company posted a message on Twitter saying that all guests are…

    Good Morning America
  • Zika Virus Outbreak Prompts CDC to Activate Highest Emergency Ops Level

    The U.S. Centers for Disease Control and Prevention's Emergency Operations Center has been moved to Level 1, the agency's highest level, due to the risk of Zika virus transmission in the U.S., officials said today. The Level 1 activation is "reflecting the agency’s assessment of the need for an…

    Good Morning America
  • US Veteran Says He is 'ISIS Soldier,' Calls Bin Laden 'Beautiful Man,' Officials Say

    The FBI has arrested a former member of the Army on weapons charges after he allegedly expressed sympathy for ISIS, called Osama bin Laden "a beautiful man" and said the murder of government agents was "a hundred percent obligation," according to court documents filed in a Washington state federal…

    Good Morning America
  • Dad Tells Other Fathers, 'Respect the Mother of Your Child' in Viral Facebook Post

    A U.K. dad’s advice to fellow dads “respect the mother of your child” has gone viral after being posted in a Facebook tribute to the mother of his 9-month-old son.Tony Emms, of Cresswell Northumberland, in the U.K., posted on Facebook last month a photo of his fiancé, Charlotte Sperry, sleeping…

    Good Morning America
  • Chinese New Year Fireworks So Dangerous That Only a Few Get to Witness

    For much of the next two weeks, millions of Chinese will welcome in the Year of Monkey, which begins today, with a cavalcade of fireworks lighting up the night’s sky. In almost every corner of every city or village in Mainland China, families will light their own firecrackers and boxes of…

    Good Morning America
  • Duchess Kate Champions Mental Health in New PSA

    Duchess Kate is on a mission. The Duchess of Cambridge, 34, is speaking out in a new public service announcement (PSA) to raise awareness for Children’s Mental Health week for her mental health charity, Place2Be. The Duchess recorded a special video message to coincide with Children’s Mental…

    Good Morning America
  • Peyton Manning Knows What He's Doing After Super Bowl Win

    Peyton Manning kept with tradition when it came to his Super Bowl celebration plans. The Denver Broncos won the Super Bowl against the Carolina Panthers, 24-10. During a press conference after Sunday night's game, Manning said that he was "taking his kids to Disneyland" before he and his family…

    Good Morning America
  • Free Workshop in Washington DC Area, Feb. 27!

    This workshop introduces you to the tools to create winning trades no matter which direction stocks move! Attend the event and get a FREE silver bar!

    Trade Up InvestorsSponsored
  • WWE Wrestler Daniel Bryan to Retire

    Former WWE champion and professional wrestling star Daniel Bryan is retiring."Due to medical reasons, effective immediately, I am announcing my retirement. Tonight on Raw, I'll have a chance to elaborate. #gratitude," he tweeted on Monday.Read: Stone Cold Steve Austin: My Life After Pro…

    Good Morning America
  • White House Asks Congress for $1.8 Billion to Fight Zika Virus

    The Obama administration is requesting $1.8 billion in emergency funding from Congress to fight the Zika virus in the United States and abroad, the White House announced today. The request comes after lawmakers on Capitol Hill urged the White House to address the spread of the virus, which is…

    Good Morning America
  • Dad's Piano-Playing Lullaby Soothes Baby Boy to Sleep in Seconds

    Take a look at little Samuel who couldn’t fall asleep because he had an ear infection. The moment his crafty dad starts playing his own version of the classic “Brahms’ Lullaby” however, the soothing sounds work like magic, putting the tiny tot to sleep within seconds.

    Good Morning America
  • Super Bowl 50: Beyonce Takes Fans Behind the Scenes of Her Performance

    Although Coldplay headlined the Super Bowl 50 halftime performance, all eyes were on Beyonce, who shared the stage with the British band along with pop star Bruno Mars.The singer, who announced her Formation World Tour right after the big game ended, is letting fans in on how her performance came…

    Good Morning America
  • Super Bowl 50: Peyton Manning 'Very Much at Peace'

    Peyton Manning says he’s “very much at peace” as he contemplates retirement from the NFL just hours after winning his second Super Bowl title. Manning, 39, finished 13 for 23 for 141 yards in the Broncos’ 24-10 win over the Carolina Panthers in Sunday’s Super Bowl game at California’s Levi’s…

    Good Morning America
  • 4 Ways to Increase Your Chances of Scoring Beyonce Tour Tickets

    Minutes after Beyonce announced her 2016 Formation World Tour during Super Bowl 50, fans flooded to her website looking for more information about the tour, and temporarily crashed the site. Fans have also been tweeting in anticipation and excitement for the ticket sales to go live. Securing…

    Good Morning America
  • Paris Jackson Reveals Struggle With Alcoholism, Pressures of Fame

    Paris Jackson, the only daughter of music legend Michael Jackson, is apparently struggling with alcoholism.In a now-deleted, profanity-laced rant on Instagram, the 17-year-old told her followers that she was being attacked online."I am expected to literally sit … all day replying to comments people…

    Good Morning America