Sleep is often hard to come by for Ed Perfetto. Three nights a week, a thick needle is lodged in his arm, draining his blood into tubes connected to a dialysis machine.
Perfetto and his wife, Melanie, get about three or four hours of sleep those nights, punctuated by alarms warning them of rising blood pressure.
But Perfetto gets up in the mornings and heads to a full day of work at IBM in Research Triangle Park. Then he focuses on his true passion – youth sports.
Perfetto, 48, founded the McGee’s Crossroads Athletic Association in 2006, in part to give his sons something to do. The endeavor consumed much of his time as he coached baseball, soccer and basketball, all while overseeing the group’s explosive growth.
Today the athletic association serves more than 400 kids, and hundreds more have benefited from the organization.
“I still have kids come up to me now and say, ‘Hey coach, thanks,’ ” Perfetto said. “These are going to be lifelong memories for these kids.”
Perfetto’s struggles with kidney disease forced him out of his role as president of the association. He keeps up with the group as much as possible, but those long nights have taken a toll.
He’s still an adviser and, occasionally, a referee or an umpire. His dedication to the McGee’s Crossroads Athletic Association can’t be forgotten: Perfetto has a tattoo on his left arm that reads “MCAA 2006.”
“It’s my baby,” he said of the association. “It’s a big part of me – I’d love to do more.”
Perfetto has battled kidney disease for 12 years, and he found out in 2011 that he’d need a new kidney.
Melanie, his wife, seemed like the ideal donor. But as she went through the screening process, doctors discovered that she also has kidney disease.
Since Melanie’s strain is genetic, the couple’s three sons have also been ruled out as donors.
“Not only does it preclude me from giving a kidney, it precludes our three boys,” she said. “It was devastating.”
Now the couple is looking for a donor. Perfetto is on the donor list, which includes 118,000people.
Qualified matches are hard to find – they have to be healthy, with no history of serious medical problems. They must meet body mass index requirements, something that disqualified MCAA secretary John Schmidt, who tried to donate.
“That’s how much he means to me – I would’ve taken my kidney out of my body for him,” Schmidt said. “There’s probably only five or six people on this earth I’d do that for.”
The athletic association has played a big role in the McGee’s Crossroads community, where Perfetto still lives with his family. Over the years, kids have stayed busy playing sports, and parents have bonded over soccer matches and volleyball games, which some say helped breathe life into the community.
But Schmidt said it’s the extra things Perfetto does for the kids that make him such a beloved figure. He stayed after baseball practices to help youngsters practice their swing or their fielding.
Perfetto paid special attention to the boys who didn’t have fathers at home to practice with. He and Melanie bought food and gifts for needy families in the program. If a family couldn’t pay the association fees, he’d quietly waive them.
“Nobody deserves to not get a kidney or heart … but this man has done a lot for so many people,” Schmidt said.
Perfetto said he still has a lot left in the tank. He’s trying to spread the word that the procedure is relatively safe – screening eliminates most of the risk, and it’s a small incision.
If he can find a donor, he can get involved in the association again – and help more kids around McGee’s Crossroads.
“I’m 48 years old, I’m active, I’ve got a lot to do,” Perfetto said. “I’m not ready to sit back and let it happen.”