Family fun day to raise awareness on Tourette's syndrome on Saturday
Having the hiccups in a quiet room can be uncomfortable — they're completely uncontrollable and can pull focus, which is not entirely unlike Tourette's syndrome.
However, instead of soft squeaks that go away after holding your breath, Tourette's syndrome is categorized by tics not limited to a repeated involuntary jerk of the body, rapid blinking or repetitive vocalizations that cannot be cured with limited air intake the way the hiccups can.
"A lot of times people don't realize these tics are things that can't be controlled," said Trisha Kellison, whose 11-year-old son Dylan was diagnosed with Tourette's syndrome three years ago.
Sherrie Sponseller with Pennsylvania Tourette Syndrome Alliance Inc. compared the tics associated with Tourette's to blinking.
"Blinking is something we all do; when you blink you're not always aware of it," she said. "We can control it to an extent if we really think about it, but no matter what, eventually you're going to blink."
Awareness: To raise awareness for her son's disorder, Kellison decided to host a fundraiser named for Dylan: the DK Family Fun Day.
The fun day, which Kellison has been organizing for the past year, is scheduled to run from noon to 5 p.m. Saturday at Jacobus Community Park, 18 S. Main St., and will feature vendors and free entertainment. Admission to the event is free, and families can purchase refreshments, $1 tickets for games and raffle prizes and a $5 wristband that will allow children unlimited turns in the bounce house. There also will be a silent auction.
Raffle and auction prizes include Hershey Story Museum tickets, a 30-minute couple's massage, a $30 Great American Saloon gift card, a Starbucks tea basket, Ski Roundtop lessons, a 15-person wine-tasting tour package with Allegro and an autographed Penn State football.
All funds raised will be donated to Pennsylvania Tourette Syndrome Alliance Inc.
"My main goal for the event is to raise awareness for Tourette's; it's a very misunderstood diagnosis," Kellison said. "People don't understand how you could have a physical or mental tic and not control it.
"I just thought, 'Boy, it would be nice if (Dylan) could just have a day where it doesn't matter what the tic is or what's going on.'"
The alliance: Kellison said her son's tics were getting especially bad a few years ago.
"At one point he had this really disruptive tic, and it got to the point where he couldn't even go out for a walk," she said. "So out of desperation I took to Google and found Pennsylvania Tourette Syndrome Alliance Inc."
The alliance is dedicated to community outreach and offers information to families and schools as well as the general public, Sponseller said.
"We do training at schools to help support a student," she said. "We also train the other kids to understand because Tourette's can make someone really stand out. It could be something that the other kids make fun of. We really want other people to be able to understand Tourette's syndrome."
The alliance also hosts a summer camp twice a year for children who have been diagnosed with Tourette's and their families.
"We have people come from all over the state," Sponseller said. "A lot of the time they have never met someone else with Tourette's, and they feel kind of alone, so it's nice that they can get together."
Kellison, whose family participated in the camp for the first time last year, met another York County mother whose son had been diagnosed with Tourette's.
Not alone: "For a long time I felt like we were the only family in York that had been affected," she said. "PATSA ... got me connected to these other people."
According to the alliance's record, there are approximately 1,000 recorded cases of Tourette's statewide, Sponseller said.
In the fall, with the connections she made at the summer camp, Kellison will be starting a York County support group.
"We're hoping to maybe meet other families," she said. "I know now that my son is certainly not the only one, and that we're not alone."
— Reach Jessica Schladebeck at email@example.com.