Avery Canahuati was six months old when she died on Monday from a genetic disease called spinal muscular atrophy (SMA). For months, her parents Mike and Laura Canahuati chronicled her life on a blog that is still inspiring millions of people worldwide.
When she was born on Nov. 11, 2011, doctors predicted she would not live past age 2. Instead of watching her die, her parents vowed she would live every day to the fullest.
Avery’s parents created a blog, Facebook page and Twitter account to keep track of Avery’s health and daily accomplishments. Some firsts she recently had include waking up smiling, having a bad hair day, eating a cupcake, meeting a fan, riding in an ambulance and pulling off a prank.
Her father Mike updated the blog on Wednesday and wrote, “Please remember, just because Avery is no longer here doesn’t mean we can’t continue to learn from her.”
The purpose of Avery’s blog and social media accounts was twofold. One — the blog updated friends and family on her condition. Two — the Canahuati family also wanted to raise awareness about the little-known disease (89% of visitors to Avery’s blog never heard of SMA prior to their online visit). They document her story online to educate the world.
It worked. Her blog jumped from 480,000 views on Saturday, April 27, to 4.3 million on Wednesday, six days later. “Avery’s Bucket List” Facebook page, started on April 6, has received more than 153,300 Likes to date.
Next to family photos and bucket list accomplishments on the blog, there are links to donate to SMA research funds and important SMA information. At the end of every blog post, readers are urged to share her story on Twitter and Facebook, so “there will one day be a cure for children who already have SMA.”
Avery’s posts also reminded parents or those wanting children to get tested for the SMA gene. The illness is genetically passed down to infants and toddlers. It affects 10,000 to 25,000 U.S. children and adults, according to the SMA Foundation figures. One in 50 people carry the SMA gene.
“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,” the blog reads, as in Avery’s voice.
Avery’s parents continue to urge people to share their daughter’s story. They are hoping to cross off one more thing on Avery’s bucket list — raising $1 million for the Dr. Kaspar’s SNA Gene Therapy program to potentially find a cure for spinal muscular atrophy.
Has reading about Avery Canahuati’s lifelong fight to find a cure for SMA and bucket list accomplishments inspired you?
Image courtesy of “Avery’s Bucket List” Facebook page.