Walking for a cure of seizures

Debbie Forrester will walk 2.2 miles Saturday morning for the Tuberous Sclerosis Alliance of St. Louis and Southern Illinois.

Her 2 1/2-year-old grandson, Stephen Schmitt, has the rare genetic disease, which causes non-cancerous tumors to grow in the brain, heart, lungs, kidneys and other organs.

Forrester isn't walking for Stephen. He'll battle the seizures caused by TS for the rest of his life.
"I guess I'm walking for a cure so all the future parents and grandparents out there don't have a child born with the disease," Forrester said. "I think Stephen is a happy child and my daughter (Jaime Schmitt) and her husband (Eric Schmitt) can give him a good life.

"But he has seizures every day. He has what they call status seizures that can last an hour or longer. He has almost died twice. Maybe some day they will find a cure and children and their families won't have to live through those things."

The Schmitts live in St. Louis and Jaime is the chairwoman of the Step Forward to Cure TSC walk, which will be held at Creve Coeur Park in Maryland Heights near St. Louis. Forrester participated in the walk last year.

Forrester is part owner of Coney Island on North Henderson Street.

Deb Forrester sits along a counter at Coney Island, 1120 N. Henderson St., Wednesday afternoon. Forrester will walk 2.2 miles Saturday morning for the Tuberous Sclerosis Alliance of St. Louis and Southern Illinois. "We have relatives from Chicago, Des Moines and Omaha who are all meeting in St. Louis to take part in the walk," she said. According to the National Institute of Neurological Disorders and Stroke, TS may be present at birth but the symptoms are hard to detect and often take time to develop. The tumors in and around the brain can have devastating effects on a child's development - including seizures, mental retardation and behavior disorders.

The Schmitts discovered Stephen's TS when he was an infant, but the diagnosis was the result of a chance visit to a dermatologist.

"Stephen had some pigment loss on one of his legs," Forrester said. "They put him under a special light to see if it could it was a first sign of TS and he lit up like a Christmas tree."
Forrester said if you just looked at her grandson, you might never know he is afflicted by an incurable disease. But he does not speak and suffers from autism.

"He looks like a big, happy little boy," she said. "But he has never been to my house. He requires care on a daily basis. And Monday through Friday, he is in some form of therapy - occupational, developmental and speech."

Forrester said the hardest part is watching her daughter and son-in-law face the daily challenges of caring for a child with TS.

"Stephen was my first grandchild. He's my only grandchild and of course I had dreams for him," Forrester said. "But the hardest part is watching Jaime and Eric cope. They have had to stand by and watch their child almost die.

"They have had to make decisions most parents never have to face. I worried about it hurting all of them, but it seems like they have grown as a family."

Forrester returned to the bigger picture.

"I'm looking forward to the walk and feeling like I'm raising money to help," she said. "There are two babies born with TS each day in the United States.

"That doesn't sound like a lot. And it isn't. But maybe we can change that just a little."

Those who want to sponsor Forrester's walk can call her at 343-2912 or stop by Coney Island on North Henderson Street.