Mary McGahhey’s 6-year-old son, Colton, was diagnosed with Angelman Syndrome — a neurological disease that occurs once in every 200,000 children. It causes severe development delays, seizures, speech delays and sleep and eating difficulties, among other issues.
The hardest part for the Greenwich family is the speech difficulties; Colton is only able to say about eight words, McGahhey said.
“The one thing about these kids is that they always have happy demeanors and are easily excitable. They’re just always so happy,” McGahhey said. “The biggest struggle for us is that he can’t talk. He gets so frustrated that he can’t communicate with us.”
Until recently, it was thought the disease had no cure.
“It made a huge impact on our life,” she said.
“When we got the diagnosis, all of our dreams were just crushed. When we heard they were so close to finding cure, like the clinical trials will start next year, we were so excited. We knew we had to do something.
“Once we found out the cure is on the horizon … we wanted to tell people and make as many aware as possible. We want everyone to know who Colton is and why he is the way he is.”
A fundraiser event is planned for Saturday in Norwalk.
Registration, which costs $35 and benefits the Angelman Syndrome Foundation, will begin at 9 a.m., with the walk to start at 10 at Sofios Park. The walk will take about 20 minutes and stay on the boardwalk to accommodate those in wheelchairs. The event will include deejays, music, food, activities, face painting and a visit from Captain America and Supergirl. T-Shirts will be available at a first come and first served basis.
To register, visit angelman.org by May 17 and search for the Norwalk location on the National Angelman Syndrome Walk page. Registration will also be available at the event.