As a first-time mom, Amber-Joi Watkins was concerned when she noticed her daughter wasn’t moving as steadily as the other newborns in their mommy and me yoga class.
“She wasn’t able to kick her feet,” Watkins told me in a recent interview. “She wasn’t turning all the way around. She was unable to hold her head up.”
Doctors told Watkins and her husband, Tommy Domalski, not to worry — children develop at different rates. Go home. Their child was fine.
But a few months later, when she was just 6 months old, Céline was diagnosed with spinal muscular atrophy, SMA type 1, the most severe form of a disease that leads to muscle weakness. About 25,000 children and adults live with SMA in the United States.
Without treatment, the disorder affects the patient’s ability to walk, breathe and eat. Patients diagnosed with SMA type 1 have a life expectancy of less than two years.
Even with treatment, doctors warned that walking was not guaranteed.
Now 4 years old, Céline is doing more than just walking — the happy, healthy and vibrant little girl was in Manhattan walking hand-in-hand with her mom on a fashion runway in front of a pink and purple backdrop as part of Fashion Week celebrations on Thursday in New York.
Mom, a former Miss Pennsylvania USA and 76ers valedictorian, was stunning in a pink dress, while her Mini Me, Céline, dazzled in the most sparkling white dress with hair ribbon and matching shoes.
Céline smiled triumphantly and waved to an adoring crowd.
The road to that track hasn’t been easy — but with the benefit of early detection and treatment at Children’s Hospital of Philadelphia, Watkins said there’s very little stopping her daughter from strutting her stuff these days.
Céline and her mother were attending Double Take, a special Fashion Week show designed to raise awareness of the SMA community. It was streamed live and watched by more than 1,000 people. (If you missed it, it will also be available as a video on demand during New York Fashion Week.)
“Exciting!” Céline exclaimed when I asked her about her debut with about 15 other models, including Shane Burcaw, a well-known Pennsylvania native with SMA who with his wife, Hannah Aylward, share their lives on a popular channel in YouTube called Squirmy and Grubs.
It was also the first time, organizers said, that a show like it was developed by the SMA community from start to finish — from conceptualizing the message to working with designers from the Open Style Lab, a nonprofit organization that creates functional and versatile pieces of clothing. for disabled people, to reflect their personal styles – including one of my favorites in the show, a dramatic and whimsical green cape.
Burcaw, who with Aylward launched the show, said the participants were not seeking to erase or hide their disability.
“The opposite – we’re using fashion to embrace and highlight everything that makes us unique,” he said.
As such, the show’s name was meant to reclaim the “double take” that disabled people are sometimes subjected to when they go out in public.
“We want the world to do a double take on these individuals, but for the right reasons,” said Michael Dunn, a spokesman for Genentech, a California-based biotech company that sponsored the show.
While she is healthy, Watkins — a vocal advocate in the SMA community who chronicles their experiences on her blog and Instagram — said Céline is not without symptoms. Because the medications and treatment are so new, Watkins said there is no clear prognosis. She wears braces on her ankles, which are usually not visible. But she also walks with a sway that sometimes causes stares.
“People actually comment on the way she walks all the time because they have no idea,” Watkins said. “I have no resentment towards this at all. I completely understand. It’s all about educating people. I know it’s not typical, but what I want people to know is that seeing her walk is the most incredible feeling ever.”
