By Michelle Sartor Lang
Senior Multimedia Web Producer
The Millburn/Short Hills community has come together to support Jake Silverman, who was diagnosed with the muscular disorder dystonia as a child, through an annual bike ride that raises money to help find a cure for the disorder. Jake’s mother, Nancy Silverman, says the annual event has given the whole family strength and empowered Jake.
According to the Mayo Clinic, dystonia causes muscles to contract involuntarily, which causes uncontrollable repetitive or twisting movements. Nancy said Jake started having severe pains when he was about 9 years old. She said it started in his hands, causing difficulty writing, and then started in his legs causing difficulty walking. At that time, after going to several doctors, they discovered Jake had had asymptomatic strep and rheumatic fever. Nancy said it took about a year to get Jake back to normal, but then “he started doing this unusual posturing.”
Jake was going back to doctors and getting worse very quickly, according to Nancy. He couldn’t attend school full time and then couldn’t go to school at all. “Walking brought him a lot of pain. He could walk but it was very painful. And he was fatiguing really easily,” Nancy said. “He had to withdraw from all sports. His whole quality of life was disintegrating.”
Jake was finally diagnosed with dystonia, which has no known cure. He was put on medications to keep him comfortable and out of pain, but Nancy said they all made him sick. “He lost a lot of weight and he would just stay in bed all day. He was on about 30 meds a day,” Nancy said.
According to Nancy, the only other option was deep brain stimulation, which wasn’t FDA approved. “We had no choice but to give it a shot because he had no quality of life,” she said. “He’s medicated, in pain, couldn’t go to school. And we decided to do the surgery.”
Jake had to withdraw from school and members of the community found out about his condition. Although he was in a wheelchair, Nancy said he was always in good spirits, made the best of his situation and never really complained.
David Gardner, who also lived in Short Hills and had done bike rides to support multiple sclerosis, suggested riding for Jake and raising money to try to find a cure for dystonia. “So he rounded up a bunch of people, who are now the Jake’s Ride Committee, at the school in town and they came up with this idea of the bike ride,” Nancy said. “And it’s been seven years — over $2 million, 21 research grants, three fellowships and we’re still working at it. It’s been incredible.”
Jake currently attends American University and Nancy says he’s doing well. “Every year he suffers a little bit of a setback, living with hardware [used in deep brain stimulation]. It’s certainly not a cure, but it has given him a quality of life. The hardware masks the symptoms,” Nancy said. “We’re so grateful for it because right now until we find a cure, at least he has some quality of life.” Jake no longer uses a wheelchair.
Dystonia is considered a rare disorder, but Nancy said many children are misdiagnosed or not diagnosed. “If everyone with dystonia was properly diagnosed, I don’t think it would be a rare disorder,” she said.
While dystonia isn’t fatal, Nancy said, “People who live with dystonia that have it really bad want to kill themselves. It’s just a horrible quality of life.”
To help those living with the disorder, the Silverman family, Gardner, Jake’s Ride Committee and the Bachmann-Strauss Dystonia & Parkinson Foundation launched the first Jake’s Ride for Dystonia Research in 2008.
Nancy said the community has embraced her family. “Every year they show up and every year they go into their pockets and they give,” she said. “Without the generosity of the community, we couldn’t do what we’ve done.” She said there are more than 1,000 riders and 200 volunteers participating in Jake’s Ride.
Jake attends the event each year, cheering on the riders as they get to the finish line. Nancy said the ride is very meaningful. “It’s given us the strength to live with this disorder. It’s given Jake strength and it’s empowered him,” she said.
This year’s Jake’s Ride for Dystonia Research is scheduled for Sunday, Sept. 28 from 9 a.m. to noon at Hartshorn Elementary School, 400 Hartshorn Drive, Short Hills. The Today Show’s Willie Geist is emceeing the ride this year.
Those interested in participating can sign up for the ride the day of the event. Cash, checks and credit cards (American Express, Visa, Mastercard and Discover) will be accepted as registration payment. Registration fees are $55 for adults and $30 for children between the ages of 5 and 17. Children under 5 are free.
To make an online donation in support of Jake’s Ride, click here.