By: Celeste E. Whittaker, @cp_CWhittaker
Jen Heicklen has seen a huge difference in her daughters’ confidence levels since they started talking about the disorder they share.
Getting up and talking in front of classrooms across the state about Tourette syndrome has not only helped the two girls’ self-esteem, but has also educated hundreds of children about the disorder.
Tourettes — an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics — has impacted both Anna, 11, and Ava, 10 and sharing their story has helped others and themselves.
Along with their mother, they’ve helped bring a New Jersey Walks for Tourette Syndrome 5K walk and family fun run to South Jersey for the first time. The event is set for 10 a.m. Sept. 20 at Upper Aetna Lake on Tabernacle Road.
She and the girls came up with the idea after hearing about the walks in other parts of the state.
“We said you know what, let’s do one down here,” she said. “My kids have worked hard to get people involved. My whole community is getting involved. For me personally, it’s not about raising money necessarily it’s about building my kids’ confidence. The money they do raise will help their confidence. There’s nothing better as a mom than to see your kids go from no confidence to confidence.”
Anna and Ava are now youth advocates for the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) and have received extensive training on how to spread awareness. They’re certified to present programs to schools, organizations and clubs throughout the state. At a recent presentation, a 12-year-old boy was inspired to tell his classmates that he also had Tourettes.