Jim Kelly backs Phila. cause that is close to his heart

Not long ago, a father could not cry. He had been diagnosed with cancer in his jaw in 2013, and it had returned last year, and the chemotherapy and radiation treatments had cost him his tear ducts. The fluid backed up, infecting his eyes. So in the middle of April, he underwent surgery. The doctors inserted a temporary tube that ran from his eyeballs to his palate and drained the tears away.

"It's always something," Jim Kelly said recently. "But you know what? Oh, well."

He was talking on the phone about the sequence of events, some of them serendipitous, some of them tragic, that would bring him to Philadelphia this weekend, to celebrate good news and a righteous cause. On Friday, Children's Hospital of Philadelphia will announce the creation of its Leukodystrophy Center for Excellence, and Kelly will be the keynote speaker at a gala at the Rittenhouse Hotel to commemorate the center's establishment.

Leukodystrophy is an umbrella term for several neurological disorders that attack the brain's white matter, and Kelly - a native of Western Pennsylvania, the quarterback who led the Buffalo Bills to four consecutive Super Bowls in the early 1990s, a 2002 inductee into the Pro Football Hall of Fame - is more familiar with its insidiousness than any man has a right to be. In 2005, his son, Hunter, died of Krabbe disease, a form of leukodystrophy that affects one child in 100,000, according to the Mayo Clinic.

Children begin showing symptoms before they're 6 months old: irritability, spastic muscle movements, delayed development. Over time, they experience seizures. They lose their ability to see, to hear, to swallow, to breathe. They often die before they turn 2. Hunter lived to be 8. Kelly concluded his induction speech at Canton by calling Hunter his hero, the toughest human being he'd ever known. Try to watch the speech without welling up. Just try.

Hunter's Hope - the nonprofit organization to fund leukodystrophy research that Kelly and his wife, Jill, founded in 1997 - has consumed Kelly's post-football life, so much so that he traveled to Harrisburg to lobby then-Gov. Corbett on behalf of "Hannah's Law," named after 1-year-old Hannah Ginion of Bristol, who died from leukodystrophy in December. The legislation, which Corbett signed two months before Hannah's death, mandates newborn screening throughout the state for several forms of leukodystrophy, including Krabbe disease.

"I see what it does to kids," said Kelly, who turned 55 in February. "I'm from Pennsylvania. My friends there are having grandchildren. I want to make a difference in that state. . . . Before I got sick, I was traveling to different places to make sure people understand. I understand that we have to give billions and billions of dollars to other countries. I do understand that, and God bless them. I'm glad they do. But - you knew there was a but there - save some of that money for our own kids, right here in our own country. . . .

"When I found out that thousands of babies died every year because they were born in the wrong state, I thought, 'Just give these kids a chance.' It's really not that much."

When Kelly met briefly with Corbett in October 2013, he was just four months removed from his initial cancer diagnosis. "You could see the passion and compassion he had for the children, the dedication," Corbett said in a telephone interview. "It was amazing. He's a good man." The irony of the meeting is that Kelly said that he doesn't remember much of it. There's no wonder why.

In March of last year, Kelly's cancer returned. From April through May, he underwent chemo and radiation. He contracted MRSA last fall and reentered the hospital. When he came to Philadelphia in November to meet with representatives from CHOP to discuss organizing a fund-raiser for the center, he was still on a feeding tube.

"Through my own thing the last couple of years, there are so many letters and cards I receive from people saying I've been an inspiration to them," Kelly said. "And I want people to understand that when I read those cards, it keeps me fighting. People say I was an inspiration? I want people to know how much they've been an inspiration to me."

CHOP will hold the center's first clinic later this month. The hospital estimates that it will identify as many as 60 newborns with Krabbe disease each year because of the mandatory screening program, and the center's goal is to streamline the treatment process for children and their parents. Bone-marrow and stem-cell transplants sometimes slow the disease's progress. Gene therapy has offered some promising results in overseas trials. "There's tremendous hope," said Amy Waldman, a pediatric neurologist at CHOP.

"Without Hunter's Hope and Jim Kelly, there would be no newborn screening," said Maria Kefalas, a sociology professor at St. Joseph's University whose charity, the Calliope Joy Foundation, funds research and programs to help children with leukodystrophy. "Jim set all these events in motion."

Because he did, people will fill a hotel banquet room on Friday night, and they will rise and applaud, and a father who lost his son will rise and speak. He might even cry. He won't be the only one.