Dad running to raise awareness of daughter’s rare disorder

LEXINGTON, Ky. (WKYT) - Thousands of runners will race in Tuesday’s Bluegrass 10,000. One pair - a father and daughter - will run to raise awareness of a rare disorder.

One-year-old Maisie Woomer has congenital myopathy caused by the RYR-1 gene.

“It had been a super normal pregnancy, and all the genetic testing was normal,” explains mother Courtney Woomer. It would take eight weeks for the family to find out Maisie had a rare genetic condition.

Because of the disorder, Maisie can’t always breathe on her own. She uses a ventilator twelve hours a day. She has muscle weakness. She’s unable to sit on her own.

“She tires very easily, but there’s so much variability with this condition that everyone presents differently,” says Woomer.

In their search for families like them, the Woomers found the RYR-1 Foundation, a non-profit that’s created a community for families with loved ones with the rare condition.

“Something like this can happen to anyone because you can have a healthy pregnancy and do everything right, but sometimes you can’t change your genetics,” says Woomer. Her husband Adam plans to push Maisie during the Bluegrass 10,000. With every runner they pass, donors are pledging money to the RYR-1 Foundation.

“Their slogan is strength in numbers, and we think that the more people who know about RYR-1 related diseases, the more hope there is for their future in terms of research,” says Woomer.

If you’d like to donate to the RYR-1 Foundation in Maisie’s honor, visit https://pledgeit.org/miles4maisie.

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