Willow Daly-Griffen likes to swim, dance and play bass in her family’s rock band. She finds all of them constructive ways to address her Tourette syndrome, which causes tics, verbal miscues, anxiety and some obsessive compulsive behavior.
“When I go into the pool and start flying, then people notice who I really am deep inside,” Willow told federal government and health officials last weekend during a Congressional luncheon in Washington, D.C. “... It’s hard to deal with TS and have people pick on you for who you are. My TS isn’t the whole part of me.”
Willow, 12, of South Dayton, is a sixth-grader at Pine Valley Elementary School in Cattaraugus County. Her parents, Jessamine and Jeremy, have two other children, Ezra, 10, who also has Tourette’s, and Hazel, 5. Last weekend, Willow was inducted into the Tourette Association of America Youth Ambassador Program, and looks to make waves when it comes to raising awareness of a largely misunderstood neurological condition.
Q. What was the weekend like?
It was fun. I was with people who understand more about what Tourette’s is. It was hard to leave.
Q. What are your goals as a youth ambassador?
Letting other youths my age, or older or younger, know that it’s OK to have Tourette’s.
Q. What do you wish people understood most about Tourette syndrome?
Tics are in the brain. Swearing is something that happens in only 10 percent of people with Tourette’s but most people don’t know that. I don’t do it. Some understanding is enough. If they don’t understand, that’s a big deal to me. If you are having a hard time in life, I would suggest to you, find something you love and do it. People will cheer for you, too.
Q. What’s your favorite song to play on the bass?
Q. I know you’re only 12, but I wonder if you’ve decided what you’d like to be when you grow up?
A marine biologist that studies nature and animals, dolphins and whales. You know, the people who dive in with the dolphins and help them find places they can go.
Western New York Families can find Tourette diagnosis and support services at tsa-gnys.org.
Twitter: @BNrefresh, @ScottBScanlon