Boy with rare seizure disorder walks to raise awareness

— Josh Campbell can't really remember a year ago when he began having a hard time talking.

"It's not even hard now," the 6-year-old said. "I'm getting better at it."

While Josh may not remember the stuttering, staring and symptoms of autism he began displaying two years ago, his mother Vinez Campbell certainly does.

Josh has a rare form of epilepsy known as Electrical Status Epilepticus during Sleep (ESES). Children with the disorder appear to be sleeping peacefully, but they suffer from seizures while they sleep. If left untreated, the child regresses cognitively and may begin showing symptoms of autism.

In honor of October being Disability History Awareness Month, Campbell has been walking through Williamsburg neighborhoods since Oct. 1, telling people about her son's rare condition. On Tuesday afternoon, Campbell, Josh and a small group of neighbors walked through Skipwith Farms neighborhood off of Richmond Road.

"I'm finding that I'm not getting as far as I like because people want to talk about it," Campbell said. "People are kind of intrigued, and I find that kind."

Josh handed out fliers that described the rare neurological condition. He said he wants to give one to Santa Claus when he comes in December.

Campbell said Josh first had a seizure when he was an infant, but doctors told her and her husband it was probably an isolated incident. When he was two he began having staring spells, and at four he started socially regressing, misbehaving and refusing to answer questions. Campbell began sleeping in Josh's room with him, and she woke up one night when he was in the midst of a seizure.

A brain activity test revealed that Josh was in a near-constant state of seizure while he slept, Campbell said.

"We were told that Joshua was seizing 85 percent of the time he was sleeping, yet there were no signs. He was appeared to be lying there sleeping peacefully," she said. "Besides the seizures being horrifying, I think the hardest part was hearing the doctors say; 'We don't know what the future holds for Joshua.'"

The stress on the brain was the cause of the cognitive regression, but Campbell said since Josh received his diagnosis, he has been receiving treatment to minimize the seizures and his autism-like symptoms have disappeared.

Mike Gorecki, a neighbor of the Campbells, was one of a handful of family and friends accompanying Campbell in Skipwith Farms Tuesday. Gorecki said spreading the word about ESES was important because it can easily go undiagnosed.

"Josh is an inquisitive and bright kid, and I can imagine the heartache of his parents," Mike Gorecki said. "Every night is a trial for him. It's one of those diseases no one has heard of."

Campbell's ESES awareness campaign has connected with people from Mexico, Denmark, South America and Canada through Facebook, and she has used Google translator to communicate with parents of children with ESES.

But she has been most impressed by the reaction of the local community.

"Here in Williamsburg, the community has been very receptive and appear genuinely interested in learning about ESES," Campbell said. "I am amazed just how much compassion is contained within this small community."

McKinnon can be reached by phone at 757-345-2341.

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