On the Net Epilepsy Foundation, www.epilepsyfoundation.org

Student speaking out about epilepsy

Boy to share story with Congress

By Bob Scott
bscott@journalandcourier.com

OXFORD -- Derrick Roberts is in Washington, D.C., this week as part of the Kids Speak Up program.

He and other children with epilepsy will talk to members of Congress in hopes of increasing awareness about the neurological condition that affects 2.7 million Americans. Almost 50 youngsters from 7 to 16 also will petition congressional leaders for more research funding.

Roberts, 14, is an eighth-grader at Benton Central Junior-Senior High School. Four years ago, he was the first Indiana child to attend the Kids Speak Up event.

When he talks to representatives Thursday, he said he hopes to "change their hearts."

"I want them to know what it is like to have epilepsy," he said before leaving last weekend. "I want them to know that we have normal lives, too.

"I want them not to be afraid of us. We didn't ask for this. It has changed our lives."

The teenager also will tour Washington, D.C.

"I want to see the Jefferson Memorial," he said. "I portrayed Thomas Jefferson at Benton Central."

Roberts started having epileptic seizures in the first grade.

"He can have really small ones or a grand mal seizure," said his mother, Donna Roberts. "He can wander or walk to the middle of the street, have a drop seizure or full convulsions.

"He can be talking to you and have an intelligent conversation, but something isn't right."

Derrick takes medication and uses a vagus nerve stimulator to prevent seizures. A small, battery-operated device is implanted under the skin near the collarbone. A wire under the skin connects the device to the vagus nerve in the neck. Weak electrical signals go to the brain at regular intervals to prevent some seizures.

When he feels a seizure coming on, Roberts also can take a horseshoe-shaped magnet and move it over his left side.

Roberts' teacher, Juanita Wagner, said she admires the boy's attitude.

"He comes to school everyday with a smile on his face," she said. "He puts in a lot of effort and is excited about learning."

Donna Roberts praised the Benton Central staff for helping her son.

"The school has been good to Derrick," she said. "They are trained well and know how to help him."

Wagner said Derrick sometimes tips off his teachers when seizures are imminent.

"Derrick has been very good at recognizing if he doesn't feel right," Wagner said.

"There are phrases he says to his paraprofessional or to other adults in room, who then walk him to the nurse's office."