Woman diagnosed with muscular dystrophy defies odds by defying gravity

A local woman who was once told that she would be confined to a walker is now defying the odds by defying gravity.Kippy Hoene, 57, was diagnosed with FSH muscular dystrophy seven years ago.

JACKSONVILLE BEACH, Fla. - A local woman who was once told that she would be confined to a walker is now defying the odds by defying gravity.

Kippy Hoene, 57, was diagnosed with FSH muscular dystrophy seven years ago.

“[The doctor] told me I’d be in a walker within three-to-four years,” Hoene said.

The disease causes muscle weakness and wasting beginning in the face and working downward to the legs.

“I would go out and people would ask me my name and I’d say ‘Kippy,’ but it would come out ‘Kipppppy,’” Hoene said. “I couldn’t even say my own name.”

The diagnosis was devastating for Hoene, an athlete who has tried a new sport every year since she was 35 years old. Although her father had muscular dystrophy, she never imagined she would also have it.

“I remember calling a girlfriend saying ‘I’m not gonna be able to go on our hikes in another few years,’” she said.

Out of that fear came inspiration.

“I want to do as much as I can before I can’t,” she said.

Hoene discovered aerial arts and eventually turned her passion into SaltAer Circus Arts in Jacksonville Beach. The studio opened in June.

For Hoene, it’s more than a business. She credits circus arts for keeping her body strong.

“I feel like it’s definitely kept my body strong, staved off the disease, the doctors would argue probably, but I can only tell you what I’m witnessing,” Hoene said.

While she knows the muscular dystrophy may ultimately catch up to her, she said she’s doing everything to defy the odds.

“One of our mottos is ordinary people doing the extraordinary,” Hoene said.

She hoped that inspiration spreads to anyone in a battle of their own.

“There is always something there for you to find contentment with,” Hoene said.  “And focus on that.”

SaltAer offers free introductory classes from 3 p.m. to 4 p.m. on Saturdays. Registration is required.

© 2017 WTLV-TV


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