News Story – Honorable Mention
– By Dayna M. Reidenouer, Engle Publishing
Aaron Wingert of Lancaster was 30 when he experienced his first epileptic seizure.
“Everything is normal in your life, and then you wake up in the back of an ambulance,” he said.
Nineteen-year-old Nadine DeBalko of Adamstown was diagnosed with epilepsy at age 12 and had to change her perceptions about the disorder.
“I thought it was just older people who had it,” she recalled.
Lancaster resident Kerri Michnya never remembers a time without seizures. She was diagnosed at age 10. Now age 42, she has been seizure-free for 11 years. Both Michnya’s and Wingert’s seizures are well-controlled by medication. DeBalko opted to have surgery two years ago to remove her amygdala, the area of the brain where her seizures were centralized. She considers herself cured.
“Epilepsy is a spectrum disorder,” Michnya explained. “It looks different and treatments are different in each person.”
Navigating life with epilepsy is challenging, the trio agreed. “There didn’t seem to be a lot of resources available,” Wingert said. “I saw my neurologist every six months, but they couldn’t help with the emotional aspect.” Thankfully, he said, he discovered the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) through social media a few years ago.
Epilepsy has two sets of specific challenges, Wingert suggested: the seizures themselves and the side effects of the treatments available. The uncertainty of the disorder, the restriction from driving and from certain occupations, and the financial costs of medication, ambulance rides, and hospital stays can create a lot of stress. For people like Wingert who have idiopathic seizures, stress can trigger more seizures. Thus, having a community of understanding people is hugely important.
Michnya is EFEPA’s Lancaster County resource coordinator. She coordinates a support group and other programs to ensure people with epilepsy have the encouragement, guidance, and information they need. “My job allows me to give back,” she said. “I feel really fortunate.”
Michnya is also helping to coordinate Lancaster County’s inaugural Walk to End Epilepsy along with Wingert and DeBalko, who are both volunteers. Wingert had attended a version of the event in Philadelphia and was so impressed by the camaraderie and sense of community among the participants that he suggested that it be brought to Lancaster.
“It was more than time to have it here,” Michnya said. “It sends a great message: You are not alone in your diagnosis.”
The Walk to End Epilepsy will be held at the Lancaster Barnstormers’ stadium, 650 N. Prince St., Lancaster, on Saturday, Oct. 12. Registration will open at 9 a.m., the walk will begin at 10 a.m., and the event will conclude by noon. Both DeBalko and Wingert are slated to speak during the opening ceremony. The walk will mimic Philadelphia’s event by taking place inside the stadium. “It really brings the community together,” Wingert said of keeping the event contained.
The event is family focused, so there will be activities for children throughout the morning. These include entertainment by a magician, face painting, balloon sculpting, and play on an inflatable slide.
Refreshments will be provided at the event, and an afterparty will be held at Yorgos, 66 N. Queen St., Lancaster. There will also be opportunities to win gift cards and other prizes at the walk. Additionally, vendors will be on hand to offer information about pharmaceuticals, CBD, and more.
The Walk to End Epilepsy will be held rain or shine. There is no charge to attend the event, but fundraising is encouraged. A minimum fundraising amount has been set to receive an event T-shirt. Proceeds from the walk will fund research into treatments and cures as well as resources for people with the disorder. Event sponsorship opportunities are available.
For more information or to register for the walk, readers may visit www.EpilepsyWalkPA.org. Online registration will close on Friday, Oct. 11. Individuals may also register at the event. Michnya may be reached for questions at kmichnya@efepa.org or 717-449-1872.
