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With help from Kait’s Angels, young woman with rare brain disease can afford specially adapted bike

Johanna Benthal, seated, with her parents and members of Kait's Angels at Saturday's yard sale. Photo: Peter Blasl

Thanks to the generosity of a local non-profit, a young special needs woman from Jamesport will be able to ride a bike again.

Last weekend, the community came together at a Kait’s Angels yard sale fundraiser in support of two local residents in need. Despite the dreary forecast, the event was a success, raising enough money along with individual donations to cover the cost of a specially adapted bike for a young woman with a rare brain condition.

Johanna Benthal has had nearly 100 brain surgeries since she was three months old due to an extremely rare genetic mutation (it affects fewer than 100 people in the world) that has plagued her with brain hemorrhages, seizures and daily headaches.

Johanna has always loved spending time outdoors, but the brain injuries she has incurred has made it difficult for her to exercise for very long. For several years now, it has been a struggle to get her outside and moving around.

But this summer, Johanna and her mother Eileen had a chance to try out a special four-wheel Surrey bike that will allow another person to ride next to her, so she doesn’t have to worry about falling off or collisions. And thanks to the fundraising efforts of Kait’s Angels, Johanna will soon have a Surrey bike of her own that has been adapted for her unique physical needs.

“Between the individual donations and the yard sale, we covered all the expenses,” Eileen Benthal said in an interview this afternoon. “I’m really amazed. The generosity of people has been remarkable.”

Johanna Benthal, 20, takes a Surrey bike for a spin earlier this summer. Courtesy photo.
Johanna Benthal, 20, takes a Surrey bike for a spin earlier this summer. Courtesy photo.

The bike looks a bit like a pedal-powered golf cart, with two benches and multiple pedals so that more than one person can pedal the bike at the same time. This also enables someone other than Johanna to steer the bike – something she was struggling with while biking alone on an adult tricycle.

Johanna has no peripheral vision and she is completely deaf in one ear. Combined with cognitive difficulties, biking alone was “starting to get dangerous,” Eileen explained in an interview for a previous story.

“She fell a couple times [on the adult tricycle], and we decided not to use it anymore,” she said.

The Surrey bike will eliminate the possibility of Johanna falling off. A bike maker in Cape May, New Jersey is customizing it specifically for Johanna, including a special seat belt to keep her safe, weighted pedals, rear and side view mirrors and even a compartment in the front of the bike for her service dog, Rae.

It will also have a battery assist feature so that it can offer different levels of resistance on the pedals or even operate on its own. This means that Johanna will be able to get valuable exercise no matter what kind of day she is having – whether she is able to give it 100 percent or just a little bit.

Because of the success of the yard sale, they will also be able to purchase a trailer to tow the Surrey bike across the North Fork. “That will allow us to do things like take the Surrey bike and go to Greenport,” Benthal said. “It will allow us to access more destinations.”

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Photo: Peter Blasl

Darla Doorhy, founder of Kait’s Angels, said she is “so, so happy” that the organization is able to do this for Johanna.

Doorhy started Kait’s Angels in 2014, after her 20-year-old daughter, Kaitlyn, was killed in an accident while away at college. The organization holds fundraisers for a variety of good causes, including supporting local families in need.

Doorhy learned about Johanna after she read Eileen Benthal’s book about their family’s journey with a severely disabled daughter.

“Losing a child is hard, but what she goes through with her daughter means that every single day is a struggle,” Doorhy said. “I wanted to help her.

“It keeps Kaitlyn’s memory alive,” she added. “We’re doing it for her.”

The fundraiser yard sale sold donated goods from the community. Johanna was also there selling a variety of baked goods that she spent a week creating, including chocolate chip cookie bars, apple bars, zucchini brownies and banana crumb muffins.

“I went into this feeling almost apologetic about asking people for help,” Eileen said today. “But what we found is that people really love to help. Someone we didn’t know sought us out directly so that he could hand Johanna the check with tears in his eyes. He said he was really touched by her story. We were blown away.”

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Katie Blasl
Katie, winner of the 2016 James Murphy Cub Reporter of the Year award from the L.I. Press Club, is a reporter, editor and web developer for the the LOCAL news websites. A Riverhead native, she is a 2014 graduate of Stony Brook University. Email Katie/a>