Tourette syndrome, a neurological disorder, generally goes undiagnosed, but according to the National Tourette Syndrome Association, an estimated 200,000 people in the Unites States are known to have the disorder. When a diagnosis is made, seeking support is the best thing that can be done. That’s just what Monica Jones, of Syracuse, did when she found out her daughter had TS. Jones, a pediatrician with her own practice (Syracuse Pediatrics), said the National TSA has been an invaluable resource from the beginning. While Jones had witnessed children with TS ticks, she had never had a patient with the disorder, although she believes TS is “relatively common.” “It was a learning experience for myself as well,” Jones said of how she and her daughter Emily, 13, coped with TS at first. “I’ve done a lot of research in kids and adults with Tourette’s.” Since Emily’s diagnosis more than three years ago, Jones says she has attended medical training sessions run by the National Institute of Health in order to become better educated on not only what her daughter was going through, but what the family would experience. Jones says that Emily has had tics since age 5, but they weren’t as extreme. By the time Emily was in fifth grade, however, her ticks took a turn for the worse. When the “tough days” outweighed the “good days,” Jones said this is when the support they felt from the National TSA kicked in. They also got involved on the local TS scene and began connecting other families of people with TS. Jones, Emily and her older daughter, Katelyn, 17, started to learn about Team TSA and how they participated in athletic events across the nation, in particular, the Walt Disney Marathon, which is held annually in Orlando, Fla. “When Emily was having a hard day, we would say, ‘If I can run a half marathon then you can get through school with Tourette’s,’” Jones said. At the time, they all laughed at the prospect of running a 13.1-mile feat. However, the challenge became something of a calling for the three Jones women. They started fundraising for their first trip to Disney, which was in January of 2009, and they were able to take some family and friends to the races, too. “It was the first time we were outside of [Syracuse] for a TSA awareness event and we met kids with Tourette’s and their families,” Jones said. The purpose of a weekend of races like this one is to spread awareness of the illness and to bring people together people whose lives are affected by TS. Jones wants people to understand the aspects of TS and to also comprehend that if someone has TS, they will affect the family and friends that surround them, but also strangers. Being around people who know nothing about TS can be most frustrating, according to Emily’s big sister, Katelyn. Once, while the Jones family was on a flight, Emily was ticking pretty noisily and also kicking the seat in front of her. The woman sitting in front of Emily complained to the flight attendant and insisted that the plane land, but also that Emily be deplaned. Before Jones could stand up and help the situation, Katelyn stood up and explained to the woman briefly what Tourette’s was and that Emily would not be deplaned because she was (and is) protected by the Americans with Disabilities Act. “It was the natural thing for me to do,” Katelyn said. “To protect my little sister.” “That was a proud ‘mom moment’ for me!” Jones said of her two daughters. “It’s one of those things you dream for, that your kids will stick up for each other.” Katelyn says she was curious and eager to learn more about TS as soon as Emily was diagnosed.
“I also saw how little other people knew,” Katelyn said.
Her mission became very clear: to educate others on TS.
Katelyn has recently become an ambassador for the National TSA. She gives regular presentations to schools and any other group that requests for someone to speak about TS. At the end of her presentations, Katelyn will host a Q&A, but she also offers her email address as a resource because kids tend to be “too shy” to ask some questions about the disorder. “If it means I raise one more person’s awareness, then that’s great,” Katelyn said.
To reach Katelyn for her TSA Ambassador services, email [email protected].
This year’s goals for Disney
The Jones women plan to run the 5k together again, for the third year in a row, during the weekend of Jan. 6. Team TSA has grown to about 160 participants for its group involvement. The weekend provides several opportunities for participants to race. Katelyn will be taking full advantage, as she will run the 5k on Friday, the half-marathon on Saturday and another 13.1 miles on Sunday when she will split the full marathon with a friend for a relay. For Emily, the weekend is about mental awareness and how she can get through every day and what she can do differently. Though for all three ladies, it’s about finding empowerment and encouragement.
To help the Jones fundraise for this year’s experience of awareness, visit active.com/donate/wdw12/JonesGirlsTic2gether. Farah F. Jadran is the associate editor for Prime and Parent and also the managing editor of Syracuse Woman Magazine. She can be reached at [email protected].