SOUTH PORTLAND — Theo LeBlanc, a sixth-grader at Mahoney Middle School, has been coping with Tourette Syndrome for as long as he can remember.

Coping with Tourette, a neurological disorder characterized by involuntary movements and vocalizations called “tics,” isn’t easy. But Theo and his family have taken action ever since he was diagnosed at an early age.

Last month, Theo and his brother Andy, a sophomore at South Portland High School, were inducted into the Youth Ambassadors Program of the national Tourette Syndrome Association. They traveled to Capitol Hill in Washington, D.C., where they attended a three-day training program devised to equip ambassadors with tools to inform their local communities about the disorder. The brothers also lobbied federal representatives to raise funds and awareness of Tourette.

The brothers engaged lawmakers in a hands-on experiment where the representatives were asked to write out the Pledge of Allegiance, cross out every third word, and tap their pinky on the table whenever the boys snapped their fingers.

The task proved almost impossible and extremely frustrating.

“It was a real game changer,” Theo said recently, “to offer something tangible for (the congressmen) to know what it feels like.”

Holding back from a tic isn’t possible, he said.

“It’s not an option,” Theo said. “It’s like holding my breath, and the longer I hold it in the more I need to breathe, and the longer I hold it in the louder it becomes.”

Tics evolve and morph through the years. At this stage, Theo’s include shoulder jerking, loud throat clearing, and grunting.

Theo hasn’t been a victim of bullying in school, but he said he knows that’s not the case for many kids with Tourette, who often are stigmatized by their peers.

For the past two years he has attended Camp Twitch and Shout, a Georgia summer camp for children with Tourette. Prior to first attending Twitch and Shout, at the age of 10, Theo had never met anyone else with Tourette.

“Imagine having something so outward, and never meeting anyone like you,” Theo’s father, Justin LeBlanc, said.

“I just want people to know that I can’t control it,” Theo added. “Other people who have it can’t control it, and it’s uncontrollable.”

He said that in movie theatres, people often give him looks of annoyance when his tics strike. “I want them to know that it bothers me more than it bothers them,” he said.

With as many as 1 in 100 people exhibiting symptoms of Tourette, the disorder is often mistaken as behavioral, and is therefore under-diagnosed.

“I’m sure there are people in Falmouth or Scarborough with TS who we just don’t know yet,” Theo said.

The family believes the hesitancy to diagnose comes from lack of awareness.

Through funding and involvement, they hope to reactivate the TSA in Maine. It was launched in 2007, but has since lost steam. They hope the trip to Capitol Hill will help get the ball rolling.

Rovena Schirling, of the Tourette Syndrome Association board of directors, said the TSA is grateful for the LeBlanc family’s commitment to raising awareness and funds.

“Theo and his entire family’s dedication continues to inspire others, especially children, to share their story and not let Tourette stand in the way of following their dreams,” Schirling said.

Now that the brothers have returned from Washington, Justin LeBlanc said it is up to him and his family to reach out to organizations, to schedule talks, and take further action.

“At the end of the day, the more people who are exposed, who hear about it, and know what makes them ‘tic,'” he said, “the easier my son’s life will be.”

Sidebar Elements

Theo, center, and Andy LeBlanc of South Portland with U.S. Rep. Chellie Pingree, D-Maine, during the boys’ recent trip to Washington, D.C., for the national Tourette Syndrome Association Youth Ambassadors Program.

filed under: