A few years ago Tara Cassidy-Driscoll and her husband Tom Driscoll told their two sons — Thomas and Robert — about Choroideremia, the rare, inherited retinal degenerative eye disease they were born with.
Choroideremia could eventually lead to blindness in both boys, but research into the disease has come very far recently and the family decided the time was right to help raise the necessary money to contribute to finding a cure. They turned to Thomas and Robert’s favorite sport — lacrosse — to raise funds and bring awareness to the disease.
Endicott College will host “See by the Sea”, a lacrosse triple-header Sunday, beginning with Endicott College and Nichols College men’s teams playing at 1 p.m. and followed by Swampscott-Saugus at 3:30 p.m. and Marblehead-Newburyport at 5:30 p.m..
Robert Driscoll is a sophomore attack for Swampscott. Thomas, a senior defenseman for Governor’s Academy, will not be playing in the event, but will be in attendance with some of his teammates.
Admission to the event is free and the fundraising will include raffles, concession stand, T-shirt sales, music and more. Sponsors and donations will also be accepted.
“I know my mom and dad have talked about it for a while. We go to all these lacrosse tournaments in the summer and that’s how they got the idea,” Robert, 16, said. “All the money is going into research, but we wanted to help out as much as we could. They’ve worked really hard.”
Currently, the disease mostly affects Robert and Thomas at night. It’s difficult for the brothers to walk around in the dark, and Robert tries to carry a flashlight with him as much as possible.
The Driscolls have learned how to live with that, but they also live with the possibility that their vision could get worse as they get older.
“It’s kind of cool to me because lacrosse has been a big part of my life and this is something that will affect me as I get older,” Thomas, 19, said. “Hopefully it won’t affect me too much in my college years, but you don’t really know how it’s going to progress. Day by day, it can go at any rate for any person. We want to raise money to help find a cure.”
Thomas feels the disease also affects his peripheral vision some, but not enough to slow him down on the lacrosse field.
After electing to follow in his father’s footsteps and attend Governor’s Academy, Thomas has committed to continue playing lacrosse at Division 3 Guiford College in Greensboro, N.C.
Robert, meanwhile, is a promising attackman for the Big Blue.
Both brothers have taken their disease in stride. Their parents elected to wait to tell the boys about it because they wanted them both to be old enough to understand it.
Neither boy felt sorry for himself. Instead, they focused on the positive: that a cure could be found in the near future.
Research has advanced to the point where a trial using gene therapy could be underway soon, but the trial costs $3,000,000. Half of that money needs to be raised through donations, which makes the “See By the Sea” event so important for the Driscolls.
“I’ve always known that I had really bad night vision. I just couldn’t see in the dark. I thought I had bad eyes. I was unaware (about the disease), but it made more sense when they brought it to light,” Thomas said. “I knew it was a really serious kind of thing that could potentially cause blindness. The research is really progressing, as long as it’s funded. It should be cured in time, as long as everything is funded.”