Swimming For Hope

By Nancy K. Crevier

On Sunday morning, September 30, Newtown resident Jim Bayles leaped into Lake Lillinonah in New Milford shortly after 6 am to begin a 22-mile swim that would end in Lake Zoar in Monroe. This was Mr Bayles’ 15th swim for charity, and his seventh swim to support the Epilepsy Foundation of Connecticut, an organization that is dear to his heart.

“The thing about epilepsy is that there is a stigma to the disease,” said Mr Bayles, whose 22-year-old daughter, Kate, has struggled with epilepsy for nearly 13 years. “People don’t understand it and they don’t understand that a person with epilepsy has no control over what occurs.” His hope is that through research and education, new ways will be found to help Kate and others like her lead a more normal life.

According to the Epilepsy Foundation, “Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain… When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person’s consciousness, bodily movements or sensations for a short time.

“Conditions in the brain that produce these episodes may have been present since birth, or they may develop later in life due to injury, infections, structural abnormalities in the brain, exposure to toxic agents, or for reasons that are still not well understood. Epilepsy affects people of all ages, all nations, and all races.”

Kate’s condition was probably present since birth, explained Mr Bayles, although it did not manifest until she was 9 years old.

In most years, Mr Bayles’ swim for charity involves a locale a bit more exotic than the lake in his hometown. He has taken on the English Channel, crossed the Pollack Rip Channel from Chatham, Mass., to Nantucket Island and braved the waters from Point Judith to Block Island, R.I. Prior to his English Channel swim, Mr Bayles swam around Manhattan, and was the first person to swim under all of the major bridges in the tri-state area.

A work project in southern California delayed his swim this year, he said, so he decided to keep the event close to home.

“I was grousing to myself about having lost my summer because of my work travel, and then I realized my daughter Kate has lost the last 12 summers because of epilepsy,” Mr Bayles said.

Although she rarely complains, Mr Bayles said Kate suffers through petite mal seizures about three times a week. She is part of an ongoing clinical study at Yale-New Haven Hospital, and in 2004 was fitted with a neurostimulator by NeuroPace. The neurostimulator is a skull implant designed to provide responsive stimulation to the affected area of the brain that triggers epileptic seizures, and hopefully halt the seizure before symptoms present. Even so, her activities are limited.

“Kate is at the mercy of family and friends who will take her to the mall, to dinner at a Friendly’s, or anywhere else she wants or needs to go,” said Mr Bayles.

Accompanied first by Kate’s twin sister, Brooke, in the kayak, and then his oldest daughter, Jen, and his wife, Trina, Mr Bayles spent 6 hours and 20 minutes in the water before exiting in Newtown near the Shepaug Dam on Sunday, trucking the kayaks and himself to the Shady Rest area, and continuing on to the Monroe boat launch, for a total of 11 hours and 35 minutes in the water.

“Every swim is interesting,” Mr Bayles said of the Lake Lillinonah/Lake Zoar swim, which was a first for him. “There is a place near Newtown, a sand bar, that is very reedy and weedy. The current there tends to stop and backflow, so swimming against it, plus some wind, made it a little rough. That was unusual,” he said.

His hope is to raise more money than usual this year. “Any overages from what I usually make will go toward the new nanotechnology prototype, with the rest going to the Epilepsy Foundation of Connecticut, who depend on my yearly contribution to fund their ongoing needs, ” said Mr Bayles. The nanotechnology is a new method that will use an infrared beam to power small nanochips that map the brain more precisely than the mapping currently available. Better brain mapping would allow doctors to pinpoint the diseased area of the brain, possibly then allowing the damaged brain portion that causes epilepsy to be removed.

“This year, as in the past six years, I dedicated my swim to finding a cure that will give Kate the freedom to go where she wants, when she wants,” said Mr Bayles. Donations can be made to the Epilepsy Foundation of Connecticut, 29 Butterfield Road, Newtown CT 06470 or by visiting swimmingforhope.com.

“Kate wants a normal life, like everyone. Her life is very isolated and lonely. That’s why I do this,” Mr Bayles said.