Local Second-Grader Lobbies For Epilepsy Funds

ERIKA ANDERSON, Staff Writer

Published: August 19, 2004

ATLANTA—Katie Majeste is not your typical 7-year-old girl. Instead of playing with dolls, she lobbies Congress on behalf of other kids like herself.

In March, Katie, accompanied by her mom, Cheryl, and older sister, Sarah, traveled to Washington, D.C., to lobby the Georgia congressional delegation as the spokesperson for Georgia Kids Speak Out, sponsored by the national office of the Epilepsy Foundation.

When Katie began having seizures, teachers first thought she was having learning problems. Her seizures are petite mal seizures, or “staring seizures,” during which she “tunes out and stares into space,” her mother said.

After a series of tests, however, Katie, a second-grader at St. Jude the Apostle School in Atlanta, was diagnosed with epilepsy, which also affects her sister and her mother.

According to the National Epilepsy Foundation, epilepsy is the most common neurological condition of childhood and affects 350,000 children aged 17 and under in the United States. For some children the regular use of antiepileptic drugs brings the seizures under effective control with minimal side effects.

Cheryl Majeste has chosen to deal with the illness that afflicts her family as a proactive mother.

“I want our girls to understand that they do have an illness and that they can sit on the fence, or they can be proactive in making a change,” she said.

It was a message that both girls heard clearly. Sarah, a freshman at Blessed Trinity High School, Roswell, attended the “Kids Speak Out” program as a Georgia representative in 2003. This year, Katie knew it was her turn.

During the trip, Katie met with U.S. Rep. John Lewis and U.S. Sen. Zell Miller to appeal for increased funding for the National Institutes of Health and the Centers for Disease Control, the two primary research organizations for epilepsy within the federal government. They also requested support for a strengthening of the Americans with Disabilities Act which sometimes excludes persons with seizure disorders.

“Zell Miller was just the sweetest man,” Cheryl Majeste said. Miller, a former art teacher, and Katie share a passion for the arts, and Katie brought him a caricature that she had drawn of him. “He just listened to her and patted her hand.”

Lewis shared amusing stories with Katie about growing up on a farm and preaching to chickens, Majeste said, and added that he was also very kind and attentive to her daughter.

Majeste said that the trip provides more than just a chance to meet politicians because the children have an opportunity to meet with other “Kids Speak Out” representatives from around the country.

“It’s an excellent opportunity for kids that have epilepsy,” she said. “They get to meet other kids who go through the same things that they do. And they’re all willing to open up and tell their stories. It makes them feel that they belong with each other.”

That was Katie’s favorite part too.

“I had fun in Washington. I found a friend named Rhianna who has seizures, too, so she understands,” she said.

Katie also enjoyed seeing the tourist sites of Washington, she said, especially the Washington Monument. She insisted she wasn’t nervous about talking to the various Georgia political leaders.

“It was my turn to go, and I wanted to go,” she said. “I wasn’t nervous. They were really nice to me.”

Katie, who enjoys math and swimming, said it’s important for her teachers to learn more about epilepsy so they know how it affects her. Her mother agrees.

“There is a stigma with epilepsy in that people think there are all these limitations on your child, but the Epilepsy Foundation and the CDC have programs that educate others, and that’s what we were trying to lobby for,” she said.

Cheryl is extremely proud of her daughters, who have taken such a positive stance on their illness.

“They’ve gotten to be great advocates,” she said. “I always just want them to do something positive with their lives. That’s what this is all about.”

For more information about epilepsy, visit the National Epilepsy Foundation at www.epilepsyfoundation.org.