Peace Bridge to honor Dystonia Awareness

Peace Bridge Goes Blue For Dystonia Awareness

BUFFALO, N.Y. -- Last year, Channel 2 introduced Western New York to Caleb, a teenager from Clarence with a story of incredible resilience.

A neurological movement disorder called Dystonia, which once restricted him to a wheelchair, no longer holds him back.

Thanks to a special procedure called deep brain stimulation, Caleb is a normal kid.

Now, together with his family, Caleb and his father Jim are giving back by raising money and awareness for a disease many have never heard of.

Jim Metherell created Toss 4 Dystonia, a local corn hole tournament.

He’s been running the tournaments for four years, and this year he hopes to raise $30,000 for the Dystonia Medical Research Foundation.

"And hopefully we exceed that,” he said Thursday at a Larkin Square tournament.

Giving back is important to Jim because the surgery that Caleb had gave Jim his son back.

Deep brain stimulation runs electrodes from his chest to his brain, which helps normalize his movements.

"Caleb doesn't need a student aide in school anymore. He's much more independent. He's really getting a lot more out of life,” said Jim.

"It used to be harder to walk around in general,” Caleb said. “Now at school, I don’t need to take a break.”

Home video the Metherells shared with 2 On Your Side show a time when Caleb’s muscle contractions were so intense, they restricted him to bent-over position. He suffered from back pain. Dystonia took a toll on his speech too, but Caleb said all of it has been getting better.

Caleb is thrilled with his progress and wants other kids with Dystonia to keep their chins up.

"Don’t give up,” he said. “You can get through it as I did. Just keep going, be positive.”

Caleb is Jim’s motivation for raising money, but Jim knows his efforts will ultimately help countless people.

"I've met so many people in the local community who are affected by Dystonia, and you know, it's really...it's heart-wrenching. The amount of people affected and how it affects them each individually,” Jim said.

Caleb wants to make clear it is a physical disorder, not a mental one. He said sometimes people who don’t know anything about Dystonia will assume it’s something else.

That's part of why they're shooting to raise awareness, and on Friday night, the Peace Bridge will be blue.

September is Dystonia Awareness month, and blue is color of the ribbon representing neurological disorders.

"It's just great having a landmark lit up for you,” said Caleb.

For Jim, it’s very meaningful.

“We're very excited about, we're happy the Peace Bridge Authority approved it, and we're hoping it helps up raise a lot of awareness about Dystonia,” he said.

The Peace Bridge will also light up blue toward the end of the month. Toss 4 Dystonia’s largest annual corn hole tournament will be held at Buffalo Riverworks on September 24, and the lighting of the bridge will coincide with that event.


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