For parents Darek and Kate Andrzejewski, experiencing Tourette syndrome happens every day. Their 10-year-old son, Mikey, has the neurological disorder.
“When you find out your child has Tourette it can be devastating,” Kate said.
“People stay in the dark, they don’t want other people to find out, so they stay home,” Darek added. “They think people are going to laugh at their kid.”
The Sooke couple offered to organize this year’s five-kilometre Trek for Tourette fundraiser for Greater Victoria. This is the first time it is being held in Langford.
“We chose Langford because this is where the families are,” Kate said. “We will be visible here.”
All across Canada, communities hosted Trek for Tourette fundraisers on March 27. This is the third national fundraiser for the Tourette Syndrome Foundation of Canada.
Mikey’s parents want to find him a few friends he could relate to. “Mikey came up to me and said he wants a 10-year-old boy with Tourette to talk with to ‘so he’ll know what I am talking about,’” Kate said.
Over the years, Darek and Kate have developed a support network for their family through friends, teachers and coaches. They want to help other families develop support systems and say participating in the Trek for Tourette was a great way to network.
“Mikey has Tourette, ADHD (attention deficit hyperactivity disorder), anxiety and difficulty sleeping,” Kate added explaining these are common issues among people with Tourette. “But he’s got a great imagination.”
The family started noticing Mikey was showing signs of Tourette with vocal tics when he was five. His parents remember them as little screeches.
Kate said it’s uncommon for children to be diagnosed before they are seven years old. The syndrome peaks when kids are between nine and 13.
Some of Mikey’s tics are vocal tics including words and noises, motor tics that include facial grimaces and dystonic tics where his muscles can lock up and he is unable to move.
“A person with Tourette has no control, but full knowledge, of what they are doing,” Darek said.
While there are numerous types of tics associated with Tourette, coprolalia (uncontrollable cursing) is an uncommon symptom.
“One in a 100 people will have Tourette and of those people only 10 per cent will have coprolalia,” Kate said.
Even though some tics can be disruptive to others, Mikey’s parents say when someone who has Tourette is stressed out or pointed out they tic more.
“Some people don’t understand and try to punish them,” Darek said. “Kids think it’s funny. I spoke to someone before and said, ‘you wouldn’t laugh at someone with Down syndrome.’”
Mikey doesn’t let his challenges stop him from living his life. He plays on a basketball team and plays piano in his spare time.
“We don’t want Tourette or anxiety to stop him from having a happy life,” Kate said.