Nathan Williams is at war with his own body.
Though daily battles are tough, this 10-year-old optimist goes to sleep each night victorious.
Nathan has Tourette Syndrome, or TS.
According to the Tourette Syndrome Association, TSA, website, Tourette’s is a neurological disorder that becomes evident in early childhood or adolescence, usually before the age of 18. Tourette Syndrome is defined by multiple motor and verbal tics. the first symptoms usually are involuntary movements of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. the most common first symptom is a facial tic such as an eye blink, nose twitch, grimace and is replaced or compounded by other tics of the neck, trunk, and limbs.
Part of Nathan’s strategies in dealing with TS is to chew gum, carry a stress ball, mentor other children with the condition, educate the public about the syndrome, and raise money to find a cure.
The Fontana youngster does most on a daily basis with the latter culminating on Sept. 3 when Nathan, his family, friends and supporters participate in the Disneyland Marathon Family 5K benefit, “One Lap Closer to a Cure.”
Nathan has collected more than $800 toward his $1,200 goal. Donations can be sent to TSA headquarters in new York in Nathan’s name.
“I really want to help find a cure for Tourette’s,” said Nathan, a fifth-grader at Alta Loma Elementary School. “Also the money raised will go to help me and others with TS become more confident.”
Nathan was about 8 when he was diagnosed with mild to moderate TS.
“He had rapid eye blinks and threw his wrist around,” said his mother Jackie Williams. “I thought he had allergies or was playing too many video games. then it got worse and he started clearing his throat a lot.”
Jackie took Nathan to see his pediatrician, who had a suspicion that it might be TS, even though there is no definitive test.
According to the TSA website, a diagnosis is made by observing symptoms and by evaluating the history of their onset. no blood analysis or other type of neurological testing exists to diagnose TS. However, some physicians may wish to order an EEG, MRI, CAT scan, or certain blood tests to rule out other ailments that might be confused with TS. Rating scales are available for assessment of tic severity.
A year after his initial visit, Nathan’s diagnosis was confirmed.
“That’s when we knew it wasn’t going away,” Jackie said.
Nathan started an endless stream of medical appointments, testing and drug therapy. It takes time, and a lot of trial and error, to find the right combination of behavior modification and medication to ease TS symptoms while inflicting the least amount of side effects.
“The side effects can be so awful; some of the medications made him so drowsy and lethargic,” Jackie said. “He’s on his fifth medication. It helps him get through the day, but the tics are still there.”
School is a challenge. “When anyone hears about someone who has Tourette, they always assume it’s the worst-case scenario,” she said. “Thanks to movies and television that’s usually coprolalia (pronounced kop-ruh-ley-lee-uh).”
Coprolalia are complex verbal tics including utterances of inappropriate statements or obscenities.
Though Nathan doesn’t have coprolalia, nor are his tics severe, friends and classmates still gave him a hard time.
“My friends would say to me, `Stay still,’ and I would tell them, `I can’t,”‘ Nathan said.
Trying to make things easier for her son and educate his peers and school staff, Jackie wanted to go to the school and address his class.
“What people don’t understand scares them,” Jackie said.
Nathan didn’t like the idea.
“I was embarrassed,” he said. “I wanted to keep it a secret. But then I talked to my mom and told her it was all right to tell. Once I let it out, life became a whole lot easier.”
Jackie, Nathan, Alta Loma Elementary school principal Stephanie Devisser, the school’s nurse and the district’s nurse explained to Nathan’s class what Tourette Syndrome is, what causes the symptoms and that it’s not contagious.
Things got a lot better for Nathan after that. He’s even come up with his own catch phrase: “Watch out, tics, you’re not the only move I can make.”
He’s become a mentor to a younger student with Tourette. “Sometimes the nurse will ask me, `Could you go and talk to him? He’s having a hard day.’ and I do,” Nathan said. “I talk to him, be his friend and tell him those kids that give him a hard time aren’t cool. It’s not cool to make fun of someone with Tourette Syndrome. It’s not cool to make fun of anybody.”
As Jackie listens to her son talk about something he’ll likely deal with the rest of his life, she beams with pride.
“His dad and I are his biggest fans,” she said. “Having a child with Tourette Syndrome has changed our lives and opened our eyes. We want for our son what all parents want for their children – to be happy and have a successful life. he has the right to be happy and successful. He’s so full of life and hope. Nathan is an amazing little boy.”