Local teen chosen as Tourette Association Youth Ambassador

By Mark Ribble

LEAMINGTON — Leamington’s Lily Steinhoff was diagnosed two years ago with Tourette Syndrome, and was recently named a Youth Ambassador for the Tourette Association of America.

The 14-year-old Grade 9 student at Leamington District Secondary School applied for the Ambassador’s program in January, and found out last week that she had been chosen.

Today (March 3) is Tourette Advocacy Day and Lily is participating in a Zoom meeting with the Michigan House of Representatives, where she will talk to them about Tourette and the challenges that come with it.

“A lot of people don’t know about it,” she said. “I’m hoping to raise more awareness.”

With Lily’s selection, she has become the first ever Canadian Youth Advocate for the Association.

“I saw it online in January, so I applied,” she said. “I’m happy to be chosen.”

Leamington’s Lily Steinhoff has been chosen as a Youth Ambassador for the Tourette Association of America. She’s the first Canadian Ambassador to be chosen.

Her mom, Julie Hartwick and dad, Harvey Steinhoff, are equally as excited.

“We’re really proud of her,” said Julie. “She came across it online, applied and got chosen. We couldn’t be more excited.”

Normally, Ambassadors are invited to the U.S. Capitol, where they would speak in front of U.S. representatives about the need for increased awareness.

But the COVID pandemic has put a damper on that trip for this year.

Lily spent last Saturday, along with her parents, going through virtual training designed to equip her and others to speak publicly about the often-misunderstood disorder.

Lily welcomes the opportunity to speak about it and raise awareness at the Michigan House and also to be able to spread the word at local schools.

About one in 100 school-aged children are afflicted with Tourette or another Tic disorder. Often, the disorder leaves them bullied, isolated or enduring lifelong 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.

For Lily Steinhoff, her symptoms began in a mild way, and progressively got worse over time, until she got her diagnosis.

She’s anxious to share her story and have people learn about the disorder.

“I’m excited to speak about Tourette and help others learn about it,” she said.