Avery bucket list baby dies
Avery, had a genetic disorder which would probably kill her before the age of 2, Mike decided to create a bucket list for her: A list of experiences they wanted to make sure little Avery enjoyed during her short time alive, according to Buzzfeed. Avery died on Monday at the age of 6 months from complications arising from the genetic defect Spinal Muscular Atrophy, which attacks the muscles, in particular the respiratory system. Mike and Laura have expressed shock at her sudden passing.Mike and Laura’s blog which listed all sorts of must-have experiences and accomplishments for their tiny daughter was so popular that even celebrities and politicians heard about her brave struggle.
Her father posted the final picture taken of Avery on the blog - in the picture, which was taken just a few minutes before her death, Avery is smiling.
It’s hard not to feel the raw emotion as you read more about the bucket list baby and the ways in which she and her parents inspired and encouraged people. Avery’s Bucket List has been an internet sensation, and, when you read just a few of the things she accomplished, you’ll understand why.
Her parents started Avery's Bucket List to help their daughter accomplish many things in the course of her 18-month estimated lifespan, but unfortunately Avery passed away before many things could be done.
"Avery passed away yesterday sometime around 3 p.m. due to pulmonary complications related to SMA [Spinal Muscular Atrophy]," her father Mike wrote on Avery's blog. "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."
Baby Avery captivated the nation with her story and expected lifespan. The bucket list was a creative idea thought up by her parents in order to allow her to do such things as throw out the first ball during a baseball game and get a (fake) tattoo. Those are two things she was able to accomplish in a short amount of time, though the ultimate goal was to raise awareness of Spinal Muscular Atrophy.
The goal was to raise $1 million for Dr. Kaspar's SMA Gene Therapy program, which the family says "could cure Avery's friends or at the very least offer advancements towards a cure for them." To date, the family only needs $365,000 more to meet that final goal.
"When people think of me," Avery wrote on her blog, "I hope they'll also think of all my friends who have been through this and who are going through this now. But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends
She was almost 6 months old.
Avery Canahuati had been diagnosed with spinal muscular atrophy, or SMA, which leads to weakness in the muscles, eventually causing problems with swallowing, breathing and limb movement.
She died Monday afternoon. Even though her parents knew her time was short, they had thought they had more time with her based on a doctor's appointment last week. Doctors had said she could live to be 18 months old.
"In short, one of her lungs collapsed and she went into cardiac arrest," her father Mike Canahuati wrote on the blog.
"I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. 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."
The disease kills more babies than any other genetic disease.
"While we were aware of the severity of her diagnosis, we never lost hope for Avery," he wrote.
He also included a note that Avery "wrote" to her parents when the blog first started, but made them promise not to open until she was gone.
Avery's parents had told reporters that they were committed to spending every possible moment with Avery enjoying their time with her, laughing with her and loving her smile. They said they would save their tears for after she had left them.
Mike and Laura Canahuati said they 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 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."
The baby was smiling in the last picture taken of her. Her father shared the picture of her taken less than 30 minutes before she died.
"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,'" Mike Canahuati wrote.
The blog, written by Avery's dad but channeling her voice, started as a way to keep friends and family updated on her condition. Eventually, the eyes of the world began following her inspiring journey.
Written with a touching mix of humor, warmth and empathy, the blog documented Avery's final days and the family's fight to bring awareness of the disease.
After a particularly challenging day at the hospital, Avery "wrote" on April 14:
"So yesterday is what I like to call an NFD, which means a No Fun Day. I learned to call days like yesterday NFD's instead of anything else because when leaving the hospital yesterday I said 'Today sucked! Sucked, sucked, sucked!' and my daddy immediately told me to not use bad words and that I was grounded, grounded, grounded. "
In spite of her challenges, the blog offered hope that her story could illuminate a health issue few people knew about.
"Overall, in my life as well as in my death, I want to make a difference in the lives of others."
Things Avery checked off in her short but impactful life include throwing out the first pitch at a baseball game, getting her first tattoo - a temporary Hello Kitty tat - and advocating for doctors to screen potential parents to see if they are carriers for SMA.
If both parents are carriers, there's a 25 percent chance their child will be born with the disease.
"Make sure when you tell people about me, you tell them I'm not dying, I'm living … and they should be too," Mike Canahuati wrote on his daughter's behalf.
Her parents promise to carry on their young daughter's legacy for other families fighting the same battle.
"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 Canahuati 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."
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 SMA Gene Therapy program to potentially find a cure for spinal muscular atrophy.
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