By Bob Jackson
Officials are optimistic they’ll top last year’s collection of more than $10,000 in donations.
AUSTINTOWN — Tom Pugh of Youngstown will never forget Christmas 1998, but not because of anything that came wrapped in bright paper and pretty ribbons under the tree.
It’s because that was when he was first struck with epilepsy, and his life hasn’t been the same since then.
“I had a grand mal [seizure] the day after Christmas,” the soft-spoken Pugh said. “I woke up in the ambulance. I didn’t know what was going on. That was the most frightening part of it. Waking up in an ambulance is not a good feeling at all.”
Pugh, 23, is one of thousands of epilepsy patients in the Mahoning Valley. He and many others were at the Cracker Barrel restaurant on state Route 46 on Saturday to help boost awareness about the disease and to raise money for research toward an eventual cure.
Volunteers spent one-hour shifts sitting in rocking chairs outside the restaurant, each representing a group, business or individual who had sponsored the effort through a financial donation.
Janet L. Mau, director of Mahoning Valley Epilepsy Fund Inc., said this was the fourth year for the fund-raising event. Last year, the group raised about $10,000, and about $10,500 had been pledged for this year’s event. “But donations are still coming in,” Mau said. “We won’t know for sure for another couple of weeks, but we should top last year’s total fairly easily when it’s all said and done.”
She said anyone who would like to make a donation, or wants more information about the group, can call (330) 270-8037.
“[Epilepsy] has been around since the earliest of times, since biblical ages, and there still is no cure,” said Tom’s mother, Lori Pugh.
Tom said that until he suffered that violent seizure, he had no clue that he had epilepsy. Until then, he was living as normal a life as any other teenage boy. But since then, especially immediately after his diagnosis, his life has followed a different track than the one he’d always imagined for himself.
He can’t drive, and he can’t go anywhere alone, for fear of having a seizure with no one around to help him. Often, his mother or sister are at his side, ready to act if a seizure takes hold.
But always at his side is Jazzy, a 4-year-old black Labrador retriever who is specially trained to recognize when Tom has a seizure, and to know what to do when that happens.
“If I’m at home, she can get medicine from the refrigerator and bring it to me or my mom,” Tom said, rubbing Jazzy’s head. “If I fall and need to call 911, she can bring me the telephone, or she can go get someone to help. She does an awesome job.”
Tom said he got Jazzy through a Michigan-based organization called Paws With A Cause, which put the dog through 18 months of training to prepare her for helping an epilepsy patient.
He said Jazzy accompanies him daily to Youngstown State University, where he is studying to become a high school English teacher.
Tom also wears a special device called a vagus nerve stimulator, a tiny box implanted under the skin near his collarbone. A wire connected to a nerve sends regular, weak electronic signals to his brain to help ward off seizures and keep the disease under control.
Mau said there are between 5,000 and 7,000 epilepsy patients in the Valley. She believes that MVE is the only local support group for them.
Matt Yerkey of Salem said the group has been invaluable for him and his wife, Wanda, in the wake of their infant son’s death from epilepsy nearly three years ago.
“We were numb. We were heartsick,” said Matt, who operates a dental practice near Salem. “We felt like we wanted to do something for other epilepsy patients.”
Their son, Blair, died in October 2005 after battling epilepsy for more than half of his tender life. A local funeral director told the Yerkeys about MVE, and the family asked that material tributes be made to the organization.
Blair had his first seizure when he was 7 months old. “It was a nightmare,” Matt said.
But after several attempts to treat the disease with medication, Blair had four seizure-free months and the family thought maybe he’d outgrown it.
But the week Blair turned 1 year old, the seizures started again, and they dogged him for the next several months until one finally claimed his life.
“This was hard at first,” Matt said of attending the fund-raising benefit. “Last year I was sick to my stomach. But this year, I kind of looked forward to it. It makes you feel good to see so many people come out to help because they care and because they want to remember little Blair Yerkey.”
Lori Pugh said that for too long, there has been a stigma attached to people with epilepsy, something she says is unfair.
“In all honesty, it’s just one more disease,” she said. “It should not be looked upon with disdain.”