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
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
"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
For Jonathan's mom, Gwen, the national walk and the Kids Speak
Up event is part of a journey they started together after that
"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."
Tamara is the editor of Chicago Parent and mom of three.
See more of Tamara's stories here.
What to do with your weekend, delivered every Thursday.
Great deals and chances to win prizes, delivered every Monday.
Exclusive offers from our partners,usually delivered twice a week.
Resources for parents of children with special needs,delivered the second Tuesday each month.