Jeff Sedlitz is 6-foot-2, 275 pounds and doesn’t scare easily.
Seeing his infant grandson suffer a grand mal seizure “was by far the scariest moment of my life,” he said.
“As a parent, and as a grandparent, the absolute worst feeling in the world is seeing your child or grandchild suffer, sad and in pain and there’s nothing you can do to stop it,” the Saint Johns man said. “It seemed like it lasted for 10 minutes but was probably less than one minute. Seeing him shake uncontrollably with nothing I could do to stop it was torture.”
Four years ago, Sedlitz and wife Dawn decided there was something they could do.
Through the business group Sedlitz leads, they spearheaded a benefit for the Epilepsy Foundation of Florida, which serves and advocates for the 400,000 or so people in the state who have epilepsy or other seizure disorders. The goal of the annual St. Johns Professional Alliance Chili Cook-Off — the 2017 event is Saturday — is to not only raise money for the foundation but help increase public awareness.
“I knew very little about seizure disorders and epilepsy and even some of what I thought I knew was not correct,” he said. “I have learned so much and wanted to do something to educate people about epilepsy. I want people to understand that it is not something to be ashamed of and hidden from society. I want to connect people so that those affected have a resource and a community that understands what they are going through.”
Epilepsy is a neurological condition that is diagnosed when a person experiences two or more seizures that cannot be attributed to another cause, according to the foundation. The family of epilepsy diseases is the third-most prevalent neurological condition in the country, affecting about 3 million people nationally and about 400,000 in Florida.
About 42,000 people die each year in the United States due to seizures from epilepsy and related causes.
The Sedlitz’s grandson, Steven, who lives in Port St. Lucie, had his first seizure shortly after his birth. His mother, Alanna Sedlitz Ippolito, described her terror in a blog on the foundation website.
“You stare down at this little miracle in your arms, when he starts to turn blue. His eyes are fixated on you, they glaze over, his head drops in your hands, while your heart drops to the floor,” she wrote. “This happened four times the day he was born, and no one would listen. … I knew something was wrong. I refused to leave the hospital without an answer. This is how my story with parenthood, and epilepsy, begins.”
At one point Steven was having at least 200 seizures a day. Now 7 he has undergone five brain surgeries and takes several medications daily. He is down to 10 to 20 seizures a day.
Steven’s doctors pinpoint the origin with a test called an electroencephalogram, or EEG, which detects electrical activity in the brain. The surgeries remove that area of the brain, Sedlitz said.
”The problem is — and this happened with Steven — the surgeon doesn’t want to take out more than they need to because of the obvious damage that it causes,” he said. “Therefore it is common that the surgery must happen again, where they go in and take out a little more.”
Fewer daily seizures “is much better than before, but it is not a victory,” he said. “We are still waiting for that. We’re waiting for the right medicine or combination of medicine or for him to simply outgrow this.” Until then, they pray, spread awareness, support the foundation and enjoy their grandson, Sedlitz said.
Despite the seizures and the resulting developmental delays, he is loving, affectionate, protective of his younger siblings and a fan of music and superheroes, he said.
”Right now he is very fond of The Flash. But he really loves them all — Batman, Iron Man, Superman, The Hulk, etc.,” he said.
Sedlitz and his family are trying to be superheroes for Steven and other people with epilepsy, but more support is needed.
“People who have cancer or other illnesses or conditions tell the world about it. There is so much funding for other illnesses and conditions,” he said.
In addition to funding for research and patient needs, the community can help end the stigma attached to the disease.
“People with epilepsy typically do not talk about it. There is a stigma attached that needs to go away,” he said. “The brain and all its wiring is such a mystery and is so misunderstood … Treat these people with the same courtesy, kindness, love and respect as anyone else.”
Beth Reese Cravey: (904) 359-4109