Maryville family tries to win adaptive bike for daughter with rare syndrome

MARYVILLE (WATE) – A family in Maryville is trying win an adaptive bike so their daughter can do something other children sometimes take for granted.

More: Vote for Stephanie to win a bike

Stephanie is sixteen, but her mother, Kathleen Wermuth said developmentally she is a three-year-old. She’s in a wheelchair most of the time, is non-verbal and has seizures.

“One of her favorite things she loves to watch is Veggie Tails,” said Wermuth. “She loves whenever they play the music, she’ll sit and she’ll wiggle.”

The teenager suffers from a rare syndrome called Phelan McDermid Syndrome. Kathleen Wermuth said the syndrome is like cerebral palsy and Autism rolled into one.

“She has seizures. She had acid reflux, severe food allergy. She’s developmentally delayed. She’s non verbal. So she’s cognitively about 3 years old,” said Wermuth.

One of Stephanie’s only forms of mobility is a wheelchair and the family has a lift on their van that was donated so they can take her to doctor’s appointments and school.

“There is not many things she gets to participate in that most kids her age would really do, like riding a bike or getting into sports,” said Stephanie’s mother.

The Maryville family entered a nationwide contest, The Great Bike Giveaway. The contest requires people’s votes. The one with the most votes wins an adaptive bike.

Wermuth said they’re trying to win a bike called Freedom Concepts. It’s similar to a tricycle, with handles that are easier for Stephanie to grasp and a conformed seat that will hold her in place.

Freedom Concepts Bike
Freedom Concepts Bike

“Normally these bikes are like four thousand dollars,” said Wermuth. “We can’t afford that.”

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