Epilepsy Takes One Brave Boy Cda Child Became Statewide Role Model
A Coeur d’Alene boy who had become a role model for epileptic children statewide died Tuesday, apparently the result of an epileptic seizure.
Toby Wohletz was found dead Tuesday morning when one of his brothers went to wake him. Wohletz apparently had suffocated on his pillow during a nighttime seizure, his parents said. He would have turned 9 years old on Dec. 18.
The boy’s funeral Mass will be at 10 a.m. today at the Immaculate Conception Church in Post Falls.
His death shocked his family, schoolmates and the Epilepsy League of Idaho, which in September named Wohletz its statewide “Winning Kid.” The award honored his courage in dealing with a relatively rare form of epilepsy that could not be treated with medication.
On Wednesday, Wohletz’s parents picked out a cemetery plot for their son and selected pictures for Wednesday night’s wake and saying of the Rosary.
“The coffin we had made by some carpenters at the church,” said Steve Wohletz, a 35-year-old sheet metal worker.
He said his son had been having seizures at night, and recently they’d grown worse.
“We’ve known for a while that it could eventually happen,” said Linda Wohletz, 33. “That doesn’t make it easier.”
It’s extremely rare for epileptic seizures to be fatal, although seizure-related accidents - such as drowning - can prove deadly, said Dave Blackwell, executive director of the Epilepsy League. The seizures stem from a disruption of brain activity. Head injury or disease can trigger epilepsy, although in most cases there is no known cause. Most people with epilepsy - 85 percent - can control their seizures through medication, Blackwell said.
Toby Wohletz was among the remaining 15 percent. He also suffered from arthritis and migraine headaches. Because of the brain disturbances, his parents said, his mental development was typical of a 3- or 4-year-old.
His first seizure came when he was 4-1/2 months old - he suddenly began jerking around. His frightened parents, then living in Kansas City, Mo., took their infant from doctor to doctor, trying to determine what was happening.
“We took him to every specialist in Kansas City, thinking this was something they could take care of,” Steve Wohletz said.
Years of tests and drugs did nothing to stop the seizures. Specialists in Portland said brain surgery likely wouldn’t work either. In April, the parents put their son on the “Ketogenic Diet,” a high-fat, low-protein regimen that limits some seizures. He’d have whipping cream and mayonnaise with every meal, and often no more than a teaspoon of meat.
The boy loved to play baseball and liked riding his bicycle, until the arthritis proved too painful. He hadn’t decided what he wanted to be when he grew up.
“He never understood what growing up was,” said Steve Wohletz.
The father picked up his business card, which reads “Steve ‘n’ Sons” metal working. Steve Wohletz tapped the word “sons” on the card.
“He was included in this part,” he said, fighting back tears.
The first time he had a seizure at Fernan Elementary School, Toby Wohletz fell down on the playground. His special education teacher, Mary Jean Cabe, had him wear a bicycle helmet after that.
“He loved playing basketball and I couldn’t keep him from that,” she said. “It was one of his joys.”
She said she’ll probably have the boy’s classmates write notes to him and attach them to balloons. Then they’ll set the balloons free, watching their messages float up into the sky.
“It kind of helps all of us do something for him and to say once again how much we loved him,” said Cabe.
Some of the students already have written their notes.
“Dear Toby,” reads one. “I know you can’t read this right now. But I’m sorry you died. And I hope you had a happy life. Love, Travis.”
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