Gates - Chili Post, New York | James Battaglia
Angelo Comer likes playing on his play set, driving his Power Wheels around his family’s backyard in Chili and drawing. The 6-year-old fills page after page with jagged patches of color, making art for just about everyone he meets. His parents, Matt and Stephanie, say it’s the best way to distract him from his near-constant, tormenting itching.
The itching is a symptom of progressive familial intrahepatic cholestasis (PFIC), a genetic condition Angelo has that causes bile to build up in his liver, destroying it one cell at a time. Normally patients are treated before age 2, but Angelo’s condition went undiagnosed for four years and after two liver biopsies. He has been on the organ transplant list since June 14, 2011.
“Being on the list is kind of a paradox,” Matt said. “You know it’s fantastic that one day you’ll get an organ, but by the same token, somebody on one side of it has to be there with a sick loved one, a child maybe, and they have to make the difficult decision to say, ‘Yeah, I want my organs donated.’ We’re unbelievably grateful to be on the other side of that.”
Matt said that despite being a full-time paramedic in Henrietta, he didn’t register as an organ donor until Angelo’s condition brought the topic to his direct attention.
“I think donating your organs is one of those things that you don’t really think about until you’re on one side or the other, and it’s unfortunate,” he said.
It wasn’t until recently that more people began taking the message of organ donation to heart.