Shootout: Kelly now quarterbacking for cure of son's disease

Seven years later he is, but just not for the team Dad might have dreamed of.

Hunter's Hope, the foundation started by Kelly and his wife Jill after their son Hunter was diagnosed in 1997 with Globoid-Cell Leukodystrophy, is Kelly's new team. And at the age of 43, he has embraced the role of coordinator, spreading the word about the disease and working to find a cure.

Kelly spoke Thursday at Heritage Palms Golf and Country Club to promote the inaugural Drive For Hope Golf Classic, which will be held March 27 at Heritage Palms. All proceeds will benefit the foundation, which has raised more than $6 million since its inception six years ago.

"My total priority now is my foundation and what we're doing," said Kelly, who passed for 35,467 yards and 237 touchdowns in 11 seasons with the Bills while leading them to four consecutive Super Bowl appearances (1990-93). "This is my lifelong commitment and when it hits you, and it hits home like it has for me, it makes it all worthwhile.

"When the doctors first told us of Hunter's diagnosis I pretty much shut myself off from the rest of the world, didn't want to talk to anybody and was pretty much ticked off at everybody.

But my wife told me if there ever was a time to use your name it's now, we can't hide behind this, our son's here for a reason. At the beginning I didn't want to hear that, but we turned our sorrow into positive energy and we're making a difference right now."

Globoid-Cell Leukodystrophy, or Krabbe Disease, is a genetic disorder that leads to the deterioration of myelin and the central nervous system. In Hunter's case, he requires oxygen 24 hours a day, is fed through a feeding tube that goes directly into his intestines and has no muscle function whatsoever. Kelly said he's never seen his son smile, but recently Hunter blinked for the first time and moved his head around.

Both Kelly and his wife were carriers of the gene that causes Krabbe Disease, but there currently is no method of early detection. One of the medical ad vances the foundation is hoping to bring about is newborn screening so that parents can be prepared to start early treatment and blood transfusions that could lead to longer and healthier lives.

"What this is all about is hope because it is the hope through my son that we will make a difference," Kelly said. "And already since we started the foundation the awareness has grown almost six figures. We see people in airports and they ask how Hunter is doing first before asking what's wrong with the Buffalo Bills.

We've touched so many corners that we never thought we would have reached and we want to continue."

Kelly credits his football background with preparing him to deal with such a life-changing situation, but he also credits his mother, who passed away after a long battle with emphysema, and his brothers for giving him strength.

Toughness was a word that defined Kelly throughout his college career at the University of Miami, where he severely injured his throwing shoulder as a senior, and as a pro where he withstood some vicious hits in the pocket.

He had a roller-coaster ride, as he described it, filled with thrills and disappointments, but he found a way to handle whatever was thrown at him.

"I think more than anything is being able to put things aside," Kelly said. "The thought of me being able to put things out of my mind, whether it was an interception, whether it was my mom passing, my son, you are able to refocus your thoughts to a different thing, something positive. I've always been that way."

Kelly has two healthy daughters and a strong connection to Southwest Florida through his wife's family. The couple used to own a home in Bonita Springs at Barefoot Beach, but sold it after their youngest daughter, Cameron, was old enough to start school.

On Dec. 12, there will be another event featuring Jill's grandmother to raise awareness for the Hunter's Hope Foundation, but a time and location have not yet been determined.

For more information on Krabbe Disease and how to donate or volunteer, go to the foundation's Web site at www.huntershope.org.