For 18-year-old Lily Steinhoff of Leamington, being a part of the annual Tourette Association of America Advocacy Day on Capitol Hill in Washington, DC was a rewarding experience.
She and her parents — Julie and Harvey — travelled to the DC area earlier this month so Lily could get her training as a Rising Leader within the organization.
She was the only Canadian there among about 25 American young people dealing with Tourette Syndrome.
They were split into three groups and all had an opportunity to meet with US representatives and their staff inside the Capitol.
They all wore teal — the official colour of the Tourette Association.
Lily has spent the past four years as a Youth Ambassador for the organization and in 2021 she made a virtual trip to Washington to be part of Advocacy Day — on Zoom.
This year, she was able to make it in person.
“We had a nice tour of the DC area,” said Lily. “My parents and I went down a few days early and saw all the sights.”
Diagnosed at 12 with Tourette Syndrome, Lily dove right in to learn everything she could about the affliction. At 14, she saw a post online about the Advocacy Day and signed up.
About one in 100 school-aged children are afflicted with Tourette or another Tic disorder. Often, the disorder leaves them bullied, isolated or enduring life-long emotional issues.
Tourette Syndrome is part of the spectrum of hereditary, childhood-onset, neuro-developmental conditions referred to as Tic disorders. These conditions affect both children and adults, causing them to make sudden, uncontrollable movements and/or sounds — called tics. They may present with other features, such as obsessive-compulsive disorder, attention deficit hyperactivity disorder or learning difficulties. Symptoms can range from mild to severe.
Lily says that over 45,000 kids in Ontario have Tourette Syndrome or other tic disorders, with 70 per cent of them experiencing bullying and 66 per cent missing school due to their tics and conditions.
Now a first-year hospitality, hotel and restaurant student at St. Clair College, Lily is hoping to branch out online with more advocacy for those with Tourette.
One of the highlights of her trip was getting to meet and befriend Baylen Dupree, who has turned her tics into a successful reality TV show called Baylen Out Loud. The show follows Baylen and her family as they navigate the challenges associated with Tourette Syndrome.
Lily says that Baylen was friendly and down to earth, just as she is on the show.
“I was able to ask her what her advice would be to someone who wants to advocate more,” says Lily. “She told me to keep posting online and reach as big of an audience as possible.”
While Lily’s tics don’t compare to those experienced by Baylen, she says that she and her parents can laugh at some of them now and that has been a benefit of watching Baylen’s show.
“It helps my parents understand when they can laugh and when I need support,” she says.
As for making friends in the US Capital, she said that was the easy part.
“It was so easy to make friends with people that know what you’re going through,” she says.
Lily’s future plans include finishing college and advocating for awareness for Tourette Syndrome. She said she’s done some talks at area organizations and schools and even one at St. Clair.
And her motto?
“Be loud, be ticcy, be free,” she says.
Lily Steinhoff, left, with reality TV star Baylen Dupree, who is also afflicted with Tourette Syndrome.
Photo courtesy of Lily Steinhoff
