Fighting Fragile X
POSTED: Monday, August 29, 2011 - 9:46am
UPDATED: Tuesday, October 8, 2013 - 11:13am
(NBC) — Jeff Dissette was a happy baby, but his parents noticed he wasn't walking or talking by age one. That's when a neurologist diagnosed him with Fragile X Syndrome. "I was blown away when I found out my child had Fragile X because I had never even heard of it," the boy's mother, Bonnie Dissette.
Fragile X is a genetic disorder that causes intellectual and behavioral disabilities. Females often have milder symptoms. Experts estimate as many as one in 130 women may be carriers. Bonnie Dissette says she was tested after he was diagnosed "and it turns out I'm a carrier. There was no family history I had no idea."
Her son is now 19. "He is at a first grade reading level. He's not independent at all," Dissette said. "He'll never be able to live in his own." Jeff Dissette is the oldest of four children, but his siblings do not have the syndrome. Still, the children feel the effects of their brother's disorder almost daily.
"Kids were looking at my brother kind of funny and I kind of wanted to go over there an tell them, 'Stop looking at my brother funny. He's really not that different,'" said 17-year-old Joe Dissette, a senior at Cardinal Gibbons High School. He helped start a Facebook page last year for other teens who have siblings with Fragile X Syndrome.
The teen said he started the page so others didn't feel like they were alone and he engages them in honest discussions. "What are some of the things your sibling does in public that embarrasses you? That was a post on our page. The responses are like he bites my arm or he starts screaming," Joe Dissette said.
In a couple of months his online support group will expand beyond Fragile X to include people with siblings suffering from other mental disabilities such as cerebral palsy or kids with autism. The group will then be called The Junior Foundation.