A local woman plans to hold a fundraising walk today for a New York boy who suffers from Tourette's syndrome and attended a camp where she worked last summer.
When Stephanie Bumgarner volunteered at Camp Twitch and Shout last summer in Winder, Ga., she met Robbie Lettieri, a 16-year-old from Smithfield, N.Y., who has a rare case of Tourette's syndrome.
Tourette's syndrome is a genetic neurological disorder that causes the brain to send signals to the body to make involuntary movements and/or sounds, called "tics."
Most tics last on average about five to 10 seconds, but Lettieri has had tics that last for hours. They have been so bad he has had to be put into a coma so the tics would stop, Bumgarner said.
Lettieri has broken bones, torn ligaments, muscles and tendons, and even broken other people's bones during severe tics. Recently, he kneed his dad in the back so hard it broke two of his father's ribs.
Lettieri cannot be left alone. He was taken out of school because he was deemed a threat to himself, teachers and other students. Most people with Tourette's syndrome take medicine to calm their tics and the other things that might come with the disorder (including attention deficit hyperactivity disorder or obsessive compulsive disorder, among others), but medicines do not work for Lettieri, Bumgarner said. He has tried more than 40 different medications, and of those, 100 different combinations.
Lettieri had an experimental surgery, called deep brain stimulation, on Jan. 31. The procedure cost more than $200,000 and was not covered by insurance. The surgery lasted 10 hours and already is helping Lettieri, Bumgarner said.
Bumgarner said working at the camp was her first experience with Tourette's syndrome.
"It was my first encounter with anyone with TS, and these kids truly inspired me with everything they go through daily - the teasing, the mistreatments at school - which, being an education major, I absolutely hate - and the misrepresentation from the media," Bumgarner said. "Robbie was one of the kids there, and his case was the worst by far. When I heard that he was planning on having the surgery, I decided to start the fundraiser for him, even though I am down here in Charlotte."
Bumgarner will host a Walk for Robbie today at UNC Charlotte's recreational fields, from noon to 3 p.m. Registration is $10 and includes a T-shirt. Register at the walk or online at www.walkforrobbie.com.
"Robbie has become my hero for everything that he has been through," Bumgarner said.