Jonathan Ramirez had his first seizure at 2.
The seizures now strike most often in his sleep so for many people who see him, he is just a typical 12-year-old boy who loves his pug, Cash, swimming and playing at Portage Park in his Chicago neighborhood.
But Jonathan thinks people should know more about him and the thousands of other kids and adults who have epilepsy. This weekend, he’s going to take a big step toward sharing their story. He will be in Washington, D.C., as the Epilepsy Foundation of Greater Chicago’s representative for the national Epilepsy Foundation’s annual Kids Speak Up advocacy and awareness event. The event follows the National Walk for Epilepsy Sunday.
When Jonathan meets with Illinois representatives and senators Tuesday, he says he plans to tell them about epilepsy and the dangers and urge them to find ways to raise money to stop the neurological disorder.
“People just don’t know about it and they don’t understand,” says Jonathan, who says he’s honored to be Chicago’s voice.
“I don’t feel ashamed to have epilepsy. I don’t feel embarrassed, either. It is actually a good thing I have epilepsy because since I have epilepsy I am able now to spread the word.”
For Jonathan’s mom, Gwen, the national walk and the Kids Speak Up event is part of a journey they started together after that first seizure.
“Once diagnosed, we had to accept it,” she says. She also knew she wanted to do something to raise awareness. When she saw a poster about the Epilepsy Foundation’s walk in Chicago, she got her mom, sisters and friends involved as part of the team, dubbed “A Journey for Jonathan.”
It’s been a scary journey so far that at times left her feeling helpless to help Jonathan and forced to fight for extra help for Jonathan at school, since the seizures and medications have left him with memory problems.
But she says she couldn’t be prouder of her boy, who she says has a big heart.
“I really do see him just continuing to want to be an advocate. There is just not enough awareness.”