Kids Speak Up: Children From Around the Country Ask Congress to Support Epilepsy Education

By Sylvia Blair
EpilepsyUSA staff
Posted: July 1, 2003

Nine-year old Steven Sturdevant from Manteca, Calif., recently got the chance of a lifetime. He was photographed sitting in the Washington, D.C., office of Rep. Richard Pombo (R-Calif.), with Pombo standing beside him. "Maybe one day, you'll have my job," Pombo told Sturdevant jokingly.

Sturdevant was in Washington April 7 to 9 as part of a national program sponsored by the Epilepsy Foundation called "Kids Speak Up."

Children with epilepsy from about 26 states, ranging in age from 7 to 16, converged on Capitol Hill to tell their personal stories and urge their representatives to pay greater attention to epilepsy's needs.

Wearing a suit and tie and looking wiser than his years, Sturdevant was on his best behavior when he shook hands at the start of the visit with Pombo. He then began telling his story of how his mother and grandmother live with epilepsy, and how the family had hoped that the disorder would not fall on him.

But one morning at breakfast, his mom asked him a question and he responded with a blank stare. Then he came out of it and asked "What happened?" He went to school that day, and friends later told his mom he was "blanking out" a lot.

Later, he told Pombo he was diagnosed with epilepsy and now has complex partial and absence seizures. He also has convulsions at night.

How the Kids Prepared for their Visits

On April 7, all the children attended a welcome dinner to kick-off the program. Their parents attended a separate dinner nearby. At the children's dinner, Linda Warner, chair of the Epilepsy Foundation and mother of a son with epilepsy, introduced Tony Coelho, senior vice chair of the Epilepsy Foundation and a former Congressman who has epilepsy himself.

"I take medicine every day, and I started at age 15. I get up and go to work everyday," Coelho told the children. "When people say you can't do things, don't believe it. You can do anything you want to. By telling Congress your stories, you will definitely have an impact."

After the dinner, the children were treated to a motivational talk and performance by Mike Simmel, member of the Harlem Wizards professional basketball team. Simmel also runs a basketball camp. But what was most interesting to the children was that fact that he also has epilepsy.

Simmel began having seizures as a young child. In an attempt to help his self-esteem, Simmel's father gave him a basketball at age 6. He spent every waking moment practicing the sport. He went to high school and college, and says peer pressure was difficult.

"I decided I would be my own person, be my own leader. I used epilepsy as a motivator. I've now been seizure-free for two years," said Simmel.

He also did some fancy basketball tricks for the children.

On April 8, the children got some advice from newly-elected board member Elizabeth Goldberg, an 18- year-old with epilepsy who has taken part in previous visits to Capitol Hill. "Tell your senators and representatives that epilepsy is a chronic condition, that people need to stop making fun of us, that we need more funding for education and more funds to help people afford medications," said Goldberg.

In their spare time, the children enjoyed a trip to the Smithsonian Museums of Natural History and American History, where they saw exhibits on New Mexico heritage, the presidential First Ladies, and an IMAX 3-D movie.

The March to Capitol Hill

After a hearty breakfast on April 9, the children and their parents left the hotel and headed out to Capitol Hill for their scheduled appointments.

Conor O'Donovan, 16, of Annapolis, Md., visited the office of Sen. Paul Sarbanes (D-Md.). Legislative assistant Marisa Milton, Esq. met with O'Donovan and his mother. He told Milton he had been diagnosed with epilepsy in the eighth grade and that he still has seizures. O'Donovan said he takes daily medication, but in the busy life of a teenager remembering to take it can be difficult. If he has breakthrough seizures, he says other kids don't understand. "Kids like me need more awareness so schools support students with epilepsy," O'Donovan said.

Fifteen-year-old Natasha Bhagat of Potomac, Md., was also at the meeting. She said she has battled seizures since she was 8 and takes 18 pills a day. One time, she had to go to the emergency room six times in one month for non-stop seizures. "We strongly support funding to find a cure," said Bhagat and her mother.

O'Donovan and Bhagat also visited the office of Sen. Barbara Mikulski (D-Md.). They spoke with legislative aide Amy Costello. "I am here to represent those children with epilepsy who are less fortunate than me," O'Donovan told her.

"I have dreams like anyone else. We need more epilepsy awareness to follow those dreams," Baghat said.

Paul Babbitt, III of Flagstaff, Ariz. visited the office of Sen. Jon Kyl (R-Ariz.). Babbitt's father was also there. Legislative assistant Donald Dempsey held the meeting. Babbitt, 13, has suffered from epilepsy since he turned 12.

"Epilepsy has changed my life in a major way," he said. "I used to do sports, and now I can't. I've had lots of problems with the medicines. Other kids don't want to be around me."

Dempsey sympathized with him, noting that Dempsey said "the level of ignorance surrounding epilepsy is striking because it's not a rare disorder."

Fifth-grader Austin Schmitt of Shelley, Idaho has had epilepsy since he was 5. Schmitt and his parents met with Matt Hughes, legislative aide to Sen. Michael Crapo (R-Idaho). Schmitt's parents said the family suffers when a child has epilepsy because the experience is a rollercoaster of emotions. "We want to stress the importance of epilepsy funding because our son struggles in school and with his peers," said Ryan Schmitt, Austin's father.

The youngster showed the aide the surgical scar on his head from earlier treatment to stop the seizures. He told Hughes that since he is on the last available medicine and still has poor seizure control, he will likely need another surgery.

The Schmitt family also met with Sen. Larry Craig (R-Idaho). Austin's father told the senator the family is running out of hope. "It's frustrating because we don't know what caused my son's seizures and we don't have a cure. He still has 30 seizures a day. He has failed tests at school, which devastates him."

After the visits on the Hill, the children and their parents reconvened at the hotel and shared stories of their experiences. Then they exchanged phone numbers and said goodbye to what one child described as "the safest city in the world right now."

"Kids Speak Up!" is funded through a grant from Abbott Laboratories.