Philly mom, daughter to walk in fashion show highlighting disability representation


Although her parents were once told she would never walk, 4-year-old CItThe Domalski line is preparing to make its runway debut ahead of New York Fashion Week.

Céline was just six months old when she was diagnosed with a severe form of spinal muscular atrophy – a rare genetic disorder that can lead to muscle weakness and respiratory failure. It affects one in every 10,000 people and without treatment, has a life expectancy of less than two years.

Amber-Joi Watkins, a first-time mom living in Philadelphia, first noticed that Céline wasn’t moving like other kids during a mommy-and-me yoga class shortly after her daughter was born. When she saw her pediatrician for a 3-month checkup, Watkins she was told that all children develop differently and that her baby was fine.

However, as Céline continued to develop, Watkins saw that she was losing muscle control, rather than gaining it. At her daughter’s 6-month visit, she saw another pediatrician, who noticed the telltale signs of SMA and told Watkins to get her child to a neurologist at the Children’s Hospital of Philadelphia as soon as possible. .

A doctor there officially diagnosed Celina with SMA type 1the most severe form of the disease. It is usually accompanied by reduced limb movements, difficulty in swallowing and feeding, as well as impaired breathing.

“Spinal muscular atrophy affects all the muscles in the body, so it affects your ability to walk, to breathe, to eat,” Watkins said. “We caught Celine’s SMA before it got really drastic, so she was still eating and breathing independently. At the same time, her doctor told us there were new medications we could try.”

Thanks to the SMA experts and specialist doctors at CHOP, Céline was able to be treated a week after her diagnosis. Now, at the age of 4, she is able to walk, breathe and eat independently and experience a full life with her family.

Since starting Céline’s treatments and starting this journey, Watkins has been vocal in her support of SMA treatments and research. She often talks to other mothers and parents who are raising children with the disease, particularly through SMA My Way, a program sponsored by the biotech company Genentech.

SMA Mom Fashion ShowCourtesy of/Amber-Joi Watkins

Amber-Joi Watkins and Céline Domalski will walk in Double Take, a first-of-its-kind fashion show highlighting disability representation in fashion, as part of New York Fashion Week on September 8.

“Every mother has a very busy life raising her children, and when you add any special needs to that, things get more complex,” Watkins said. “I started blogging (with SMA My Way) to share some insights about our lives, like how we deal with physical therapy, fitting clothes and our lifestyle.”

Genentech is also a sponsor of Double Take, a first-of-its-kind fashion show featuring Céline and Watkins. The event aims to increase disability representation in fashion and champion adaptive clothing. Participants worked with designers at Open Style Lab, a non-profit organization that creates functional and adaptable pieces for people with disabilities.

The show, which takes place on Thursday September 8 at 10am, wants to encourage viewers to do a ‘double take’, focusing on fashion rather than the disability of its models.

“CItThe line is in a very unique position with her SMA, and so she doesn’t need as many modifications as a typical SMA patient might,” Watkins said. “In her case, she’s very petite. and it’s really hard to find clothes that fit. her. Open Style Labs adapted CItcustom line clothing so we can change her length and size as she grows.”

Watkins said Double Take aims to show viewers that people with disabilities deserve and have a place in the fashion industry.

Although Céline’s treatment for her SMA has been successful, Watkins wants to use her platform to help other parents understand the benefits of medical treatment. Over the past four years, Watkins and her husband, Tommy Céline, started the SMA Research Fund at CHOP to support medical advances in the understanding and treatment of SMA and other rare genetic disorders.

The couple has since donated $100,000 to the cause, and Watkins hopes the funding will enable the hospital to improve its SMA treatment facilities and help more children living with the disease.

Those who want to watch Double Take can watch a live stream of the show or a video on demand during NYFW.



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