Trumbull teen waiting for a transplant

New Haven, Conn. (WTNH) - It's July -- summer vacation -- and 16-year old Connor Aylward of Trumbull just wants to put on his Silly Bandz and be a kid.

"Swimming in my friend's pool, hanging out, playing some video games -- all those good things -- taking walks, bike rides," he said.

But those things will have to wait because right now Connor is at the Yale-New Haven's Children's Hospital, which has become the Aylward family's home-away-from-home.

"We call it our summer home actually," mom Janice Aylward said. "Connor's here a lot, he's here a lot."

Connor has severe Cystic Fibrosis. It's caused fluid to build-up in his lungs, it's triggered diabetes and it's leading to liver failure.

"He's very, very wise about what he needs to do to stay well and how much he needs to do to stay well," said Dr. Maria Egan , Director of Yale's Cystic Fibrosis Center , who has known Connor since before he was two years old.

That involves taking his meds, doing his therapy and spending a few days at the hospital several times a year. But what he needs most right now is something he can't control. Connor needs a liver, which most likely will come from a living donor. It's not an easy thing to find for someone in his condition.

"It makes it a very, very tight place to be," Dr. Egan said. "Tight-rope walking; his liver not being healthy and his lungs being healthy enough to tolerate a transplant."

Connor's rare blood-type makes things even more difficult. It's B-positive, which despite it all is exactly what Connor and his family try to do -- be positive. People with O-positive can also donate blood for Connor.

"There's a cure there, waiting, just to be found, so we're just hoping that day comes sooner than later," Janice Aylward said.

"Between doing my treatments, taking pills, being out of school a lot - it's not easy, it's my life, so I'm just glad I have it and nobody else does," Connor said.

Because Connor's liver is not failing quickly he doesn't score well on the transplant list. That's why he needs a living donor, someone willing to give part of his or her own liver. If you'd like more information on transplants and donations visit the Yale-New Haven Transplantation Center at http://www.ynhh.org/transplant/