SOUTH DAYTON, N.Y. (WIVB) — Watch Willow Daly-Griffen glide through the water, and you’d never know she’s learned to live with Tourette Syndrome.
“A week without swimming, [and] it constantly gets worse from time to time,” the sixth grader at Pine Valley Elementary said.
The 12 year old says medicine made her sick, so she worked to find other treatment options, like swimming.
“It’s still challenging every day. I think that no parent is ever prepared to hear the news that their child has a neurological disorder,” Willow’s mom Jessamine Daly-Griffen admitted.
Doctors diagnosed Willow when she was six. “You get made fun of a lot. When i was younger, I would like write a word down, and I would tick, and then I would write another word down, and I would tick. It took me like an hour to write a sentence,” Willow recalled.
Sometimes even adults struggle to understand what Tourette Syndrome does to the body. The family feels fortunate to have connected with the Tourette Association of America. “They helped us get the counseling and the doctor help that we needed to normalize Willow’s life for her,” Jessamine said.
Willow will be in Washington DC this week learning about educating her peers and community about the disease. She’s one of 43 teens from across the country to be named a youth ambassador. She’ll also deliver a speech to members of Congress.
Mom is thrilled beyond words. “She’s really taken it by the reigns. I think her life was driven by Tourette for so long, and she’s decided to drive Tourette now. She’s managing her symptoms, and she’s going to teach other people how to do that.”