Jonathan Williams is the picture of an average teenage boy as he lounges in his living room in a T-shirt and shorts. But he also wears a medical alert bracelet on his wrist, signaling that all is not as it seems.
Williams, 18, has been fighting a seizure disorder since he was 4. At first they weren’t disruptive. He would be at home or school and would simply blank out for a few seconds. He was told he shouldn’t swim or ride a bike but he learned to do both anyway.
Then two years ago, his condition took a turn for the worse and he began having what he calls “drop seizures.”
“When he falls, he falls like a tree,” said his mother, Phyllis Williams. “He’s just so stiff.”
He can have several seizures a week or sometimes none for a couple of weeks. Strobe lights will trigger an episode as well as stress or excitement, but there’s no predictability.
“They just happen with no warning,” he said. He takes six medications a day to try to control his condition.
Williams had a bad seizure one day in the hall at Freeman High School. Students were confused about what was going on and didn’t know what to do. None of Williams’ friends, who know about his condition, was nearby. “Nobody was helping me,” he said.
After that, Williams’ doctor recommended that he not go back to school. Now he sees a resource teacher in his home once a week. In between her visits he spends his time playing on the computer, doing homework and traveling to Seattle to see specialists. He has also been training his 2-year-old German shepherd, Thor, as a therapy dog for his senior culminating project.
Training the dog has been tough, Williams said, but the two have participated in special training classes and Williams has taught Thor the basics – sit, come, lie down and play dead. “He’s good at that,” Williams said.
Even though his mother gave him permission to drop out when he turned 16, Williams has been determined to graduate. It’s something he saw his older siblings do. Among the long list of things he can’t do, like drive or live on his own, completing high school is the one goal within his grasp.
His other goal is to find some sort of treatment to end the seizures. His mother is researching a promising device, in use in Europe, that is inserted in the ear like a hearing aid and stimulates the nerves with electrical pulses. The device is not yet approved for use in the U.S.
Asked what he might like to do in the future if his seizure disorder is cured, Williams sits deep in thought. He has spent all his effort and energy wondering if he will have a seizure and fall and hit his head, wondering if he will survive the next day, the next week, the next month. He can’t think of anything on the spot, but perhaps in a few years he’ll have plenty of time to consider what comes next.