|
Bill Carty was 28, married and had three young children when he went out to play racquetball one day. It had been years since he’d last played, “and I was surprised that, when the ball hit the wall, it would vanish from my vision,” Bill, now 55, recalls. “But I knew, right away, what it meant.”  It meant that he probably had retinitis pigmentosa, or RP, a sight-stealing disease that begins with the loss of peripheral vision and progressively worsens. Bill guessed as much because, on his mother’s side, five generations of the family had been affected by it. So when he received the official diagnosis, he wasn’t so much surprised as disappointed. “Even though my mother had it, my father had always told me that I wouldn’t get it – just because he didn’t want me to get it,” Bill explains.Like so many first diagnosed, Bill went through denial, which made sense. He had a family; he was just kicking off a career with aerospace and defense-technology giant Northrop Grumman. Going blind? he thought. I don’t have time for that. “But then I started walking into things,” he says. “I’d crash into other people’s carts in the grocery store. I knew I couldn’t ignore it anymore.” Luckily, Bill had a couple things going for him. He was referred to ophthalmologist Dr. Samuel Jacobson, a Foundation-funded researcher whose work included studying family histories to identify the genes responsible for retinal diseases. It would take a few years, but Bill’s family gene was identified. This means that they’ll quickly learn of future treatments targeting that gene. But Bill also had ties to the Foundation itself. His parents had volunteered and contributed to what was then known as the RP Foundation, and during a Foundation conference in Orlando, Florida, in the early 1990s, he discovered the tools he’d need to function at high levels, both personally and professionally. “I was determined to be independent, but when I got to Orlando, it was intimidating, navigating that big crowd in the lobby,” Bill says. “But then I saw lots of people with canes and guide dogs, and they were doing a lot better than I was.” So he ordered a cane from a vendor and looked into getting a guide dog. After receiving mobility training, Bill “outed” himself, in essence – both at work, where he’s now vice president and general manager of the Defense and Government Services Division, and among friends and family. At age 35, Bill also had to stop driving. Five years later, he took the next step and got a guide dog, which meant more training. Bill, now divorced from his first wife, recalls, “It turned out that the trainer of my dog and I became friends and, ultimately, more than friends. We got married. That’s Colleen.” Today, Colleen and Bill have a 12-year-old son. Bill’s family history being what it is, he and his three sisters, who also have RP, have been active in Foundation chapters up and down the East Coast for the past 15 years, helping to raise, in his estimation, more than $3 million thus far. Bill, as a Foundation national trustee, is fully aware of the research it funds and has facilitated, especially recent gene therapies that show promise for the future treatment of RP. “That’s extremely exciting,” Bill says. “And whether it makes a difference for my vision or not is irrelevant. When I speak to groups, I hold up five fingers. I’m the fifth generation in my family that we can count thus far that’s had RP. If we can stop it for the sixth and seventh generations, which are alive now, that’s what the Foundation is all about. And we will.” |
