Girl born with progressive disease SMA on the mend, has big plans for the future
MIAMI - Celine Domalski was busy riding her unicorn at her Miami Beach condo as she readied to walk in a very important fashion show.
"I'm doing a fashion show," Celine told Lisa Petrillo.
"Are you excited?", asked Petrillo.
"Yes," she said.
"So what are you doing in the fashion show?" asked Petrillo.
"I'm supposed to do a half turn," she said.
As four-year-old Celine practiced her half turn, her mother, Amber Joi-Watkins, said she was just an infant, she and her husband Tom Domalski felt something wasn't quite right with their baby girl.
"When she was about three months old, I noticed that she wasn't rolling or kicking. We were just doing some of the things that I saw other kids doing at my 'Mommy and Me' yoga class," said Watkins.
At first, Watkins' pediatrician told her Celine was just fine. But she could tell something was off. A few months later she was told to find a neurologist right away. The diagnosis was spinal muscular atrophy or SMA.
"It's a progressive disease," said Watkins. "There are four types. Celine has the most severe type, SMA Type 1. It's a disease that affects all muscles in the body. The gross motor skills, your ability to swallow, your ability to breathe, and every muscle in the body. It's similar to ALS."
A frightening diagnosis that left her parents understandably devastated.
"The life expectancy left untreated is two years, so it was a very scary diagnosis," said Watkins.
But soon, there was hope.
"More than a glimmer of hope," Watkins explained. "At the time we were told that there are these treatments coming on the market and we didn't know a lot about them but we're going to try them. Celine's very fortunate to have received treatment and that's why we are here today."
Petrillo asked if the treatment was a game-changer.
"Huge," said Watkins. "A life a saver."
Now, the progression of the disease has stopped.
Celine does physical therapy with her mom and dad every day and continues to get stronger. In fact, she told Petrillo she has big plans for the future.
"I want to be a doctor or a chef," she said.
"Either one of those is a perfect choice," said Petrillo.
Just last week, to kick off New York Fashion Week, Celine, her mom, and others with SMA, hit the runway wearing designs they adapted with Open Style Lab, a nonprofit organization dedicated to creating functional yet stylish solutions for disabled people. The program is sponsored by Genentech as part of the SMA My Way program, which was built to support and raise awareness for the SMA community.
"We are claiming our space in the fashion world, letting people know that there is a space for disabled people and that fashion should be accessible for disabled people," explained Watkins.
Watching her daughter walk the runway was a "steal the show" moment that her mom hopes will help change long-held stereotypes for Celine and others like her.
"I just want people to see that Celine is fashionable, beautiful, and smart," said Watkins. " Even with SMA."
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