How Teen Is Winning Bout with Epilepsy Elmhurst Youth Going to Washington to Ask Lawmakers for More Research, Education Funds
Grondin, Kathryn, Daily Herald (Arlington Heights, IL)
Byline: Kathryn Grondin Daily Herald Staff Writer
Jason Dave has long wanted to be just one of the guys, to not be singled out because of his epilepsy and the seizures it has produced.
After all, the Elmhurst boy couldn't control the seizures that, without warning, sent him into a daze or short-circuited his ability to speak - sometimes 30 to 40 times in a day.
It took much of his energy just to stay awake because of medications.
"It's been kind of a mess," said Jason, 17. "The kids decided to single me out ... because I was quiet and didn't want to goof around.
"All that was on my mind wasn't so much the seizure but the abuse I was going to get from the kids that day. You take a deep breath and walk in (to school)."
To help even one child avoid that same social isolation, Jason is stepping into the spotlight Sunday to speak to lawmakers in Washington, D.C., to request more money for epilepsy research and education.
He is among a contingent of 30 youths from across the country who are converging at the capital Sunday through Tuesday to share their stories with hopes of making a difference for others with the neurological disorder, for which there is no cure.
The march on Capitol Hill is part of a Kids Speak Up program sponsored by the Epilepsy Foundation and Abbott Laboratories, which has been researching the disorder for more than 50 years.
Fortunately for Jason, brain surgery two years ago and a new regimen of medications have left him without seizures. He knows, however, that not all children with epilepsy are so lucky.
According to the Epilepsy Foundation, more than two million Americans have epilepsy. Of those, 300,000 are children younger than 14. In seven out of 10 people with epilepsy, no cause can be found.
"Epilepsy is a serious and common disorder of the brain," said Dr. Ken Sommerville, a neurologist who has been doing epilepsy- related research at Abbott Labs for more than 10 years. "It can devastate lives."
Most seizures can be controlled by drugs, but the key is finding the right one and the proper dosage.
"This affects their lives so profoundly," said Sommerville, whose 9-year-old nephew has been dealing with epilepsy for several years. "The more options the patients have, the better."
For Sommerville's nephew, the right drug was determined after two tries, he said.
For Jason, it took more. He was diagnosed when he was 8 years old after various scans of his brain. …