CHANTILLY, Va. (WNEW) — Swinging on the family porch at their Chantilly home, there doesn’t appear to be anything different about Jack Varanelli.
“I’m just a normal 12-year-old kid,” Jack says. “I like video games, reading, and going outside. I just went to France, Spain and Italy.”
But then he will start kicking his leg, then rolling his eyes, then pulling his hair. It’s life with Tourette Syndrome.
“Sometimes tics come out at random times,” Jack explains. “Sometimes, when my siblings yell like they just were, I can be screeching and barking.
“One of my recent tics is kicking my leg. I’ve been told to do an opposite movement like forcing my heel down.”
Jack was diagnosed with Tourette’s when he was 8 years old.
“My best friend is TJ and he’s one day older than me. He also has Tourette’s,” Jack says. “When I met him we were 7 and … I hadn’t been diagnosed yet, but a year later I was.”
Jack wanted his classmates, friends and neighbors to know more about Tourette’s. So he and his mom, Christine, decided to use their neighborhood art show — which features 13 families where the kids produce all types of artwork, including a place for the children to write what makes them special — to raise funds for the Tourette Syndrome Association of Greater Washington.
With such a small group, they hoped to collect anywhere from $25 to $100. They made $1,000.
A few months later, Jack’s mom ran the New York City Marathon and raised about $5,000 more for the TSA.
Then came the big surprise.
The Varanellis were awarded the grand prize in FamilyFun Magazine’s National Volunteers Contest after Christine submitted Jack’s art show fundraiser. That meant another $5,000 for Tourette’s awareness.
“I didn’t think this would happen. This is quite amazing,” Jack says.
In all, the family gave more than $10,000 to the Tourette Syndrome Association of Greater Washington.
“The Greater Washington chapter means so much to us,” Christine says. “Tourette’s is rare; it’s not that common like ADD. You can’t just go to your neighbor and ask, ‘What do I do?’ They provide referrals for doctors, support like who you can talk to, and they educate people about the disorder.”
For Jack, the real prize was teaching more people about what it’s like to live with the unexpected tics, scratches, and barks that can be associated with Tourette’s.
“Through all of this, his confidence has grown,” Christine says. “He feels like he can make a difference.”
“No one’s really normal,” Jack says. “But everyone can make a difference.”