NEW YORK (WCBS 880) – Growing up hasn’t been easy for one man from northwestern New Jersey.

WCBS 880’s Alex Silverman With The Amazing Story

Jack Higgins, of Vernon, knows the bright side is the only place worth looking.  He is one of just 130 people in the world with Barth Syndrome – an extremely rare, and potentially fatal, genetic condition.

“You know, I’m used to it. After so many years, I just laugh and let it roll off,” says Higgins. “In the beginning of the years of life, it was very scary. But nowadays, I mean, it’s not as bad.”

Higgins turned 18 this year – at 4’9″ and 105 pounds.

“But I mean, it has its ups and downs. You know, it’s good being small. It’s bad being small,” he said.

“It affects the muscles, the heart,” he told WCBS 880 reporter Alex Silverman. “In the hot days, it is very hard to go outside.”

The condition keeps him looking like a 12 or 13-year-old kid.

When the rest of his high school class started driving, Higgins didn’t. He didn’t want to have to explain his condition to a police officer.

“Since then, I mean, someone gave me a nice pep talk and I’ve been driving since. So, no one’s really cared,” he said.

Higgins will be a senior this year at his high school in Sussex County.

Then he says he will “probably go to a community college to get culinary or acting classes… I love to cook and I love to act. I’ve always dreamt of, like, being in a role or something.”

Higgins’ mom had two brothers, who died from Barth.  However, thanks to advances in medicine, the condition is no longer a death sentence.

“You know, I’m one of the lucky ones,” Higgins said. “I’m thankful for that.”

LINK: More Coverage Of Jack’s Story From The Star-Ledger

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