By Lauren Wanko
Twelve-year-old Sam Regen eagerly waits on line for soccer star Tim Howard’s autograph. The two share more than a love of the game. They both have Tourette syndrome.
“It’s definitely difficult because you’re trying to have a normal life but you’re always ticking and doing tons of other things,” Regen said.
“Tourette is a neurological disorder that’s characterized by involuntarily ticks, movements and sounds. It usually appears when kids are 6 or 7 years old. There’s no test for TS. It’s through observation,” said Faith Rice.
Rice founded NJCTS in 2004. The CDC indicates it is not known exactly how many people have Tourette syndrome. Their study found that one of every 360 American children ages 6 through 17 have been diagnosed with TS based on parent report. But NJCTS says many more have the disorder without being properly diagnosed. Medications and behavioral treatments are used to treat Tourette. Research suggests that it is an inherited genetic condition.
“It’s very easy as a young child to think, ‘Oh this is a nervous habit’ or it’s something they can control,” said Leslie Kowalski.
The Kowalski’s daughters — Tess and Paige — were both diagnosed with TS at 5 years old.
“On my hardest days it’s been constant ticking, every minute. It’s been exhausting, it’s been painful and embarrassing,” Tess said.
“It’s kind of like a little voice inside your head you have to listen to even though you don’t want to,” Paige said.
“What people fail to recognize is how much folks who suffer with Tourette or dealing with Tourette have to deal with it internally every day,” said Tim Kowalski.
On the field, 14-year-old Ethan Lederman practices his soccer skills. He was diagnosed with TS eight years ago.
“It’s a struggle every day. From waking up in the morning and going to sleep,” he said.
Surrounded by crowds of fans, Howard shared his own feelings on Tourette.
“I deal with it every day. Some days are good, some days are tough. But life is good. I want to achieve things and TS never allowed that to stop,” he said.
All of the proceeds from this event go toward the NJCTS Tim Howard Leadership Academy — a four-day training for teens with Tourette syndrome to focus on resilience, self-empowerment and advocacy tools. It happens at Rutgers in August.
“We’re launching a fundraiser that will be year-long to endow the Academy,” Rice said.
There’s no cure for Tourette syndrome, which is why the Regen family takes it day by day.
“The unfortunate thing with Tourettes, it changes every day so you don’t know what you’re waking up to,” Charlotte Regen said.
Dad Adam says events like this remind their son he’s not alone.
“At first he thought, ‘I have Tourettes and that’s it.’ When he found other kids that have it, he felt much more comfortable,” Adam said.
These kids look just as comfortable on the field too. Maybe there’s a future Tim Howard in the crowd.