NKY martial arts school raising money for girl with rare genetic disorder

Martial arts studio raising money for girl with rare disorder

WILDER, Ky. (FOX19) - Martial Arts America in Wilder raised money for a girl with a rare genetic disorder by holding a “Kicks for Clara” event on Monday.

Clara Weaver, 4, was born with an extremely rare genetic disorder called Progressive Myoclonic Epilepsy 6.

According to Clara’s mother, Stacey, there are only 13 people in the world with the genetic disorder and Clara is the only one with her mutation.

“It’s shocking, it’s heartbreaking and it’s hard,” Stacey Weaver said.

Weaver says Clara underwent more than a year of tests and doctors visits as an infant. She was diagnosed with PME 6 at 18-months-old.

“It was nice to get an answer, but at the same time that answer didn’t give us any answers,” she said.

Clara recently had to have a trach put in to help her breathe. She needs round the clock care and her parents often sleep in shifts.

Clara can not walk or talk and her parents don’t know if she ever will.

“The most she was ever really able to do was if you laid he flat she could use her legs to push herself and roll herself a little,” Weaver said. “It’s kind of like a muscular dystrophy. She really has a hard time building any muscle.”

Weaver’s aunt, Julie Woods, owns several of the Martial Arts America studios in the Tri-State area.

According to Woods, Clara's hospital stays and medical bills get expensive. Woods came up with "Kicks for Clara" to help raise money for her family.

“She’s extra special and she needs 24-hour care and needs help so that’s what we’re going to do, help,” Woods said.

On Monday, Woods’ students paid a minimum of $10 donation to participate in the class and hit a certain amount of kicks, depending on their goal.

“We’re kicking for Clara,” Woods said.

Weaver says both her and Clara are grateful for the support.

“It’s really amazing what she’s done and what the school’s been able to do,” she said.

The family is looking for weekend nursing care for Clara.

There will also be another "Kicks for Clara" on Wednesday at the Anderson location on Beechmont Avenue.

If you would like to donate to "Kicks for Clara," you can send a check to:

Caring for Clara

Martial Arts America

1412 Gloria Terrell Dr #5

Wilder, Ky., 41076

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