When twelve-year-old Chicagoan Jonathan Ramirez visits Washington DC at the end of this month, he’ll be doing more than just taking in the sights and sounds of our nation’s capital. He’ll be meeting with members of Congress, in order to educate them on what it means to be a young person growing up with epilepsy, and, in the process, to help advance legislative efforts in support of people with the disorder.
Jonathan, who lives in Chicago’s Portage Park neighborhood on the city’s northwest side, was selected to take part in “Kids Speak Up!” by the Epilepsy Foundation of Greater Chicago, the local Epilepsy Foundation affiliate with which he and his mother Gwen have been involved for many years. He is one of more than 40 young people taking part in the Epilepsy Foundation’s annual “Kids Speak Up!” program, which runs from March 27-29.
After spending time receiving intensive training on issues of importance to people with epilepsy, as well as on how to be an effective advocate, Jonathan and the rest of the “Kids Speak Up!” participants will visit Capitol Hill, urging members of Congress to help secure a better future for children with seizures by supporting federally funded medical research, programs that improve access to appropriate care, and public health education to reduce discrimination against people with epilepsy.
Jonathan developed epilepsy in 2001, when he was just two years old. Over the past decade, he and his mother have made educating others about the condition a primary part of their lives.
“From the beginning, I knew that, because of the lack of understanding so many people still have about epilepsy, I was going to have to be a strong advocate for Jonathan,” Gwen Ramirez says. “People just don’t know enough about the disorder. They don’t always know what people with epilepsy need, or how to help them. And part of that is due to a lack of awareness. The more we can get people talking about epilepsy, the more people will ‘get’ it.”
“I’m just a normal kid,” Jonathan adds. “Every once in a while, though, I have a seizure. It’s nothing to be ashamed of or embarrassed about. But if I have one and people don’t know what’s happening, they might freak out or do the wrong thing. Or they might start treating me differently.”
Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. It is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined. More than 3 million people in the U.S. have some form of epilepsy. Thirty percent of them are children under the age of 18.
On the morning that “Kids Speak Up!” begins, Jonathan and Gwen will also take part in the National Walk for Epilepsy, which will be held on the National Mall in Washington DC. To the Ramirez family, beginning their DC trip with a walk seems appropriate: Shortly after Jonathan’s diagnosis, Gwen and Jonathan took part, for the first of many times, in the Foundation’s annual Greater Chicago Epilepsy Walk.
“For us, that walk was the first step, if you will, into the world of epilepsy. And when Jonathan and I first started down the epilepsy path, we knew it would be a journey. So that first year, we named our Walk team ‘A Journey for Jonathan.’ Going to Washington is the next part of that journey, both literally and figuratively.”