Hamilton resident Rose Stolarz set up KARE Foundation to assist people living with epilepsy after her 14-year-old son was born with the disease.
HAMILTON - Resident Rose Stolarz said her 14-year-old son, Kyle Stolarz, has epilepsy and now, through her non-profit KARE Foundation, she helps to educate and provide assistance to others living with the disease.
"There's a big stigma against epilepsy," Stolarz said. "You know (people think) 'they're possessed.' Most of them can't drive, can't get jobs, people just don't want to be around them for fear of they're going to have a seizure."
Stolarz said she set up KARE in 2010 to help people know that they are not alone because, when Kyle was born, she found no resources to turn to.
Stolarz said KARE receives a few $1,000-plus in donations per year, up from the mere $10 she earned in 2010, which goes toward providing medical assistance and grants for parents to get seizure-alert devices for their children.
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Stolarz said also she recently put together "welcome bags" for epileptic children who are undergoing long-term testing at the Children's Hospital in Philadelphia to see if they qualify for brain surgery that can help prevent seizures.
"These bags are going to have little goodies for them because with testing, the kids have to stay in their rooms," Stolarz said.
The number of days a person undergoes testing in the hospital is determined solely on how severe the individual case is.
Stolarz said a person would have to fail every medication, therapy and dietary option to qualify for surgery.
Kyle Stolarz went for long-term testing five years ago after multiple medications did not stop his seizures, but he did not qualify for surgery and now is on a medication that works best for him.
Kyle has two younger brothers Liam, 11, and Colin, 3. She said Kyle is a freshman at Mercer County High School where he learns life skills.
"He doesn't necessarily need to know who all the presidents are," Stolarz said with a laugh. "He needs to know how to live independently."
KARE relies solely on donations through fundraising events and donation cans set up at local businesses, Stolarz said.
The most recent upcoming KARE event is the second-annual Super Run on May 14 at The College of New Jersey where people come race while dressed as superheroes, she said.
All of the events Stolarz said she hosts incorporate some sort of informative sessions on epilepsy.
Stolarz said it upsets her that people still joke about the disease and seizures.
"Don't make fun of seizures," Stolarz said. "It is a very scary, scary disease. We don't want to be made fun of and we want epilepsy to come out of the shadows."
Stolarz said she is working on establishing a local support group to work alongside her non-profit because although she never dealt with discrimination in her own child's life, she knows people who have.
"Someone I'm very good friends with, her son has epilepsy and her family doesn't even want anything to do with her," she said. "I don't know why people would want nothing to do with a child who has seizures."
Stolarz said donations can be made and information on the disease can be obtained from kyleandrose.com or on Twitter and Facebook.
"I want people to understand not to be afraid of people like Kyle," she said. "They're not going to hurt you, you can't catch epilepsy. And I want people to understand that it's OK to be their friend. They just want friends."
Lindsay Rittenhouse may be reached at lrittenhouse@njadvancemedia.com. Find NJ.com on Facebook.
