Johanna Benthal has always loved spending time outdoors. But her brain injury makes it difficult for her to exercise for very long, and her family has long struggled to find ways to get her outside and moving around.
Johanna has had nearly 100 brain surgeries since she was three months old due to an extremely rare genetic mutation that has plagued her with brain hemorrhages, seizures and daily headaches.
Now 20, Johanna is a spunky, entertaining and vibrant young woman. But the dozens of brain surgeries have taken their toll on her physical and mental development, and over the years she has increasingly struggled with her gait and balance, making exercise almost impossible for her.
Until now. This summer, Johanna and her mother Eileen had a chance to try out a special four-wheel bike that will meet all of Johanna’s unique physical needs. Called a Surrey bike, it 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.
“She has no peripheral vision, she can only hear out of one year, and with the cognitive issues, it started to get dangerous,” Eileen Benthal said. “She fell a couple times, and we decided not to use it anymore.”
But with the Surrey bike, Eileen said, another person will be able to ride with her to steer the bike and help her pedal. It comes with 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. And that’s important when it’s been so difficult to find ways for her to exercise regularly, Eileen said.
“When she’s having a really rough day, it can be hard for her to even walk or talk,” Eileen said. “Her abilities are so variable.”
That goes for Eileen, too. Recently diagnosed with multiple sclerosis, she deals with daily fatigue and weakness. “So when she’s having a good day, and I’m having a rough day, we can still get out there and ride,” she said.
The bike is currently being customized specifically for Johanna’s needs by a bike maker in Cape May, New Jersey. “He’s worked with people with disabilities before and he says that’s what makes his job so rewarding,” Eileen said.
Adaptations to the bike include weighted pedals, a special seatbelt to keep Johanna safe, rear and side view mirrors and even a compartment in the front of the bike for Johanna’s service dog, Rae.
The only problem is the price tag. At $5,000, the bike is too expensive for the Benthal family to pay for out of pocket. Eileen did not think they would be able to afford it – and then Darla Doorhy, the founder of Kait’s Angels in Southold, contacted Eileen to ask if her organization could help the Benthals out with anything.
“She told me that Johanna’s name keeps coming up in their meetings as someone they would like to reach out to and help, and she said, ‘Is there something that we can do for Johanna?’
“I started crying,” Eileen recalled. Three days before the phone call, she had just said a prayer asking God to help her find a way to get this bike to Johanna. “And then Darla called offering help, and that really made the decision for me.”
Kait’s Angels is a non-profit organization that was created in memory of Darla Doorhy’s daughter, Kait Doorhy, who was just 20 years old when she was struck and killed by a a vehicle while away at college. Kait’s Angels holds fundraisers in Kait’s memory for a variety of good causes, including supporting local families in need.
Kait’s Angels will hold a community yard sale on October 1 to benefit Johanna as well as Bill Esposito, a survivor of a horrific motorcycle crash. Johanna will be selling baked goods at the event – “she really loves baking,” Eileen said.
Anyone interested in donating goods for the yard sale can drop them off September 30 between 3 and 7 p.m. at Doorhy’s home in Mattituck, located at 1125 Ole Jule Lane.
You can also donate to Johanna’s bike directly through Paypal.
