Avery Canahuati, the five-month-old girl who captured millions of hearts worldwide with her inspirational “bucket list” has died.
Diagnosed with a very rare form of disease called Type 1 spinal muscular atrophy (SMA), doctors gave Avery 18 months to live.
But Avery passed away on Monday after suffering complications related to SMA.
The blog "Avery’s Bucket List", created late last month on April 26, chronicled the baby’s daily life and the items on her bucket list -- a to-do list of activities before one’s death.
Usually written by her father Mike -- but penned in Avery’s voice -- the blog has gone viral with millions of page views.
Some of the items on her heart-wrenching bucket list were to “Open a birthday gift from a stranger” and “Build something with my daddy”.
The latest items checked off her list were “Not let SMA take my smile away” and “Take one last breath, and then take one more before I go”.
On Tuesday, Mike wrote, “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.”
“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.
Raise awareness of SMA
In every one of their blog posts, the Canahuatis urged readers to share Avery’s story by “updating your social networks, e-mailing all of your contacts and talking to your friends/co-workers [about SMA]”.
“If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature,” Mike wrote in Avery’s voice.
Avery’s newest goal on her bucket list was to raise S$1.2 million to bring Dr. Brian Kaspar’s SMA Gene Therapy program out of the lab and into the SMA patient population to possibly stop the progression of the disease.
So far, S$862,000 has been raised.
SMA is the top genetic disease of children under the age of two and occurs in nearly 1 out of every 6,000 births.
In the latest blog post, Mike also promises to continue campaigning the awareness of SMA, ensuring genetic testing for the disease is made universally available and finding a cure for patients who are diagnosed with SMA.
“I will not break that promise [to Avery] and in the name of SMA awareness and finding a cure, I hope parents of children everywhere will look at Avery’s Bucket List and help her complete items she was unable to.”
Singaporean director Anthony Chen described as “surreal” the 15-minute standing ovation that followed the world premiere of his debut feature film "Ilo Ilo" at the Cannes Film Festival on Sunday. Though the ending of the premiere couldn’t have been more perfect, the 29-year-old Chen said the beginning was quite “nerve-wrecking” as it was marred by technical glitches.