‘Eagles for Epilepsy’

Golf instructor Steve Prater watches James Stewart practice driving. Despite James' epilepsy, "his potential is huge," Prater said. (Photo/Angela Stewart)

Family member inspires effort to raise awareness, funds to support those affected

 

Roanoke Catholic School fourth grader James Stewart, 10, admires St. James not only for his name, but also for his courage and persistence. Likewise, James, who was diagnosed with epilepsy at age 2, has learned to be persistent in his own life, especially while playing his favorite sport: golf.

On May 1, a golf tournament created in his honor, Eagles for Epilepsy Charity Golf Tournament, will be held at Roanoke Country Club to raise money for local families facing the many challenges of epilepsy.

“I feel good about the chance to help other people with epilepsy, and to let them know they’re not alone,” James said.

Inspired by her younger brother, Katherine, 14, came up with the idea of founding Eagles for Epilepsy, a non-profit designed to support local families of children living with epilepsy and to raise awareness about the illness. Katherine, who hopes to become a physician someday, knows firsthand how James’ illness has been a challenge for her family and presented her idea to her brother and parents, Jason and Angela, in late 2019.

“We want to help other families, and we want to inspire others to know that they can get through whatever they’re going through,” Katherine said.

According to the Center for Disease Control, 1 in 26 people will develop epilepsy in his or her lifetime.

Most people don’t realize how common epilepsy is, Jason said. “It can be anything from an annoyance to life-changing to life-threatening.”

Even among those who do know about epilepsy, Jason explained, most people don’t understand how many expenses there can be, such as prescription drugs, tests, monitoring devices, occupational therapy, camps, visits to specialists and travel. The Stewarts have faced all of that, including past travel to specialists in Charlotte and Winchester, as well as Johns Hopkins in Baltimore. James now sees Dr. Nebrata Daba, a pediatric neurologist in Roanoke.

“A lot of other children have this,” Angela said. “One good thing to come out of this stressful experience is that you bond with other families, especially the mothers. I’ve met the strongest people.”

Knowing that there are other local children with epilepsy whose parents may not have adequate resources was behind the family effort to form the charity.

James has what are called absence seizures— sometimes called “petit mal” seizures. “It’s when he just blanks out,” said Jason. He used to have as many as 60 seizures a day but now, thanks to medication, he has only one or two.

James’ classmates at RCS are aware of his condition and support him if he has a seizure.

“Everyone at Roanoke Catholic has been great through the years, from kindergarten on, and his current teacher, Jessica Humphrey, is incredible,” Jason said. “And with the other students, James is making them more cognizant of others’ needs.”

Education is essential to keeping children with epilepsy safe and healthy, Angela said. “One of our goals is to help people understand it.”

Brother and sister James and Katherine Stewart regularly play golf together. Inspired by James, Katherine formed a charity, “Eagles for Epilespy,” to raise funds to help support families of children with epilepsy. (Photo/Angela Stewart)

Because of the danger of absence seizures, contact sports have not been an option for James. But golf is the perfect game for him – fortunately the whole family enjoys playing. The Eagles for Epilepsy Charity Golf Tournament was a natural choice for the Stewarts to attain their goal of helping other families dealing with epilepsy.

“James has really good hand-eye coordination,” Jason said.

When James was 5, he met golf instructor Steve Prater at Roanoke Country Club, who continues to work with him.

“James has a lot of natural ability and he swings like the pros; his potential is huge,” Prater said. “And he’s a great example of how to not feel bad about something that’s challenging you; he just works through it.”

James, who dreams of being a professional golfer someday, is eagerly looking forward to playing in the tournament. He was also happy to learn that professional golfer Lanto Griffin, who grew up in nearby Blacksburg and also worked with Steve Prater, will play at the event.

The inaugural tournament had been planned for spring 2020 but was canceled due to the pandemic. The year’s delay was frustrating, Jason said, but it also allowed for more publicity, interest and support to grow.

“I’ve been amazed at the sponsorships and donations; people have been very generous,” he said.

Like James, Katherine is an avid golfer, and they especially like to play together. In fact, Katherine said, the two have become closer because of James’ illness.

“We’ve both grown up with James’ epilepsy, and I’m definitely proud of him,” she said, “and our whole family has learned that we are a team together.”

That team is strengthened by prayer.

The Stewarts, members of St. Andrew Parish, pray together a lot.

“I pray a zillion times a day,” Angela said. “This experience really humbles you, but it makes you stronger, too.”

Jason noted that James can be an inspiration to others facing epilepsy – or anything – in their lives.

“When we see other successful people with challenges, it helps us,” he said.

James says that above all, he would simply like to tell people: “Be brave and don’t give up.”

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