SEA ISLE CITY — One South Jersey teenager is making waves in building a statewide community for epilepsy.
Paul’s Purple Warriors and the Epilepsy Services of New Jersey hosted their second annual Seize the Wave seminar Tuesday. The event takes young people with epilepsy into the ocean and teaches them how to surf in a welcoming, safe environment.
Paul St. Pierre, of Maple Shade, Burlington County, the namesake of Paul’s Purple Warriors, organized the event with the help of his mother, Colleen Quinn. St. Pierre is 15, a rising junior at Eastern Regional High School in Voorhees, Camden County, and was diagnosed with epilepsy when he was in eighth grade.
“I really think it means happiness, to see all these people surf and having epilepsy,” St. Pierre said.
“It’s amazing,” Liza Gundell, CEO of Epilepsy Services of New Jersey, said of the event.
Epilepsy is a kind of brain disorder that causes regular seizures. The Centers for Disease Control and Prevention reports that about 92,000 people and 12,000 children have epilepsy in New Jersey.
About three dozen young people and their families turned out at the beach off 37th Street in Sea Isle. Each surfer received one-on-one lessons from a volunteer instructor who surfed with them and could respond if their students encountered any trouble out on the water. Heritage Surf Shop and Tass Home Remodeling partnered with the organizers to host the event and helped provide the instructors.
Surfing, and most activities in water, are usually considered unsafe for people with epilepsy, with St. Pierre noting that the ocean could be especially scary, making Tuesday a unique opportunity for these kids.
Jared Muscat flew to the Jersey Shore from California for Seize the Wave and was its star guest for the second consecutive year Tuesday. Muscat was diagnosed with epilepsy just before he left for college at 17. Despite his diagnosis, he was determined to continue surfing and has partnered with the Epilepsy Foundation to raise awareness.
Muscat is now 31 with a wife and son and still loves to surf. Paul’s Purple Warriors reached out to him via Facebook, and Muscat said he was glad to be able to come out, serving as an inspiration for others.
“It’s all about just the kids and getting them to be able to do something that they haven’t been able to do,” Vazquez said.
Mrs. Brizzle’s Buns catered the event, and the children could grab hoagies and other lunch food after surfing. Tony Mac, a guitarist from Lititz, Pennsylvania, played live music.
St. Pierre’s advocacy is not limited to the shore. He went to Trenton to advocate for legislation to make New Jersey schools and businesses more accommodating to young people with epilepsy.
Due in part to St. Pierre’s efforts, Gov. Phil Murphy signed a law in January 2020 requiring schools to develop individualized health care plans for students with epilepsy or other seizure disorders. It also requires that schools train all personnel to care for said students. The legislation was titled “Paul’s Law.”
Susan Roth, director of special services for Eastern, praised St. Pierre for his resilience and said he was more than deserving of the name “warrior.”
Quinn, St Pierre’s mother, has helped him change the landscape of seizure care in New Jersey and has been a source of support for her son as he has grown up with epilepsy. She said she was touched by the solidarity and community on display Tuesday.
“It’s enough to make you tear up over the camaraderie for all these kids,” Quinn said.
Quinn and St. Pierre are currently advocating for legislation to strengthen Paul’s Law, requiring school staff to regularly renew their certification in seizure response training. They also are working to advance a bill that would require businesses to post signs about epilepsy response.
Colin Dowling-Ashworth, of Hunterdon County, was another first-time surfer Tuesday and said surfing was just an example of what was possible for those with epilepsy.
“Of course, you got to be careful, but you can really do anything you want,” Dowling-Ashworth said. “Just take precautions and have fun.”
Lexi Yeatts, of Cherry Hill, is a Special Olympian with a gold medal in swimming. She has epilepsy, though she said she hadn’t had any seizures in two years.
Yeatts was there to surf and praised the experience.
“No matter what your disability is, or what’s wrong with you, you can still do it,” Yeatts said.
Source: pressofatlanticcity.com, Christopher Doyle