A Philly mom was told her daughter would never walk. She just strolled with her down a Fashion Week runway.
Doctors said a toddler with a rare neuromuscular disorder probably wouldn’t be able to walk. This week, she took part in a New York City fashion show to increase disability visibility.
As a first-time mom, Amber-Joi Watkins worried when she noticed that 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 legs,” Watkins told me in a recent interview. “She wasn’t quite rolling. She wasn’t able to hold her head up.”
Doctors told Watkins and her husband, Tommy Domalski, not to worry — kids develop at different paces. Go home. Their baby 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. As many as 25,000 children and adults are living with SMA in the United States.
Without treatment, the disorder affects a 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 cautioned, walking wasn’t guaranteed.
Now 4 years old, Céline is doing more than just walking — on Thursday, the happy, healthy, and spirited little girl was in Manhattan walking hand-in-hand with her mother down a couture catwalk in front of a pink and purple backdrop as part of the festivities for New York Fashion Week.
Mom, a former Miss Pennsylvania USA and 76ers dancer, was striking in a pink dress, while her Mini Me, Céline, dazzled in the sparkliest white fringe dress with matching hair bow and shoes.
Céline smiled triumphantly and waved to an adoring crowd.
The road to that runway hasn’t been easy — but with the benefit of early detection and treatment at Children’s Hospital of Philadelphia, Watkins said there is very little that stops her girl from strutting her stuff these days.
Céline and her mom were taking part in “Double Take,” a special Fashion Week show designed to raise awareness of the SMA community. It was livestreamed and watched by more than 1,000 people. (If you missed it, it will also be available as an on-demand video during New York Fashion Week.)
“Excited!” Céline exclaimed when I asked 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 YouTube channel 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 Open Style Lab, a nonprofit organization that creates functional and alterable pieces of clothing for people with disabilities, to reflect their own personal styles — including one of my favorites in the show, a dramatic and trippy green cape.
Burcaw, who with Aylward kicked off the show, said participants were not looking to erase or hide their disabilities.
“The opposite — we are using fashion to embrace and accentuate everything that makes us unique,” he said.
As such, the name of the show was meant to reclaim the “double take” that people with disabilities are sometimes subjected to when out in public.
“We want the world to do a double take of these individuals, but for the right reasons,” said Michael Dunn, a spokesman for Genentech, a California-based biotechnology company that sponsored the show.
While 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 aren’t usually noticeable. But she also walks with a bit of a sway that sometimes elicits stares.
“People actually comment on the way she walks all the time because they have no idea,” Watkins said. “I don’t have any resentment towards that at all. I completely understand. It’s just 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.”