Java, NY – Many of us know former Buffalo Bill Jim Kelly as a Hall of Fame quarterback. But he's also making great strides through Hunter's Hope, the organization named in honor of his deceased son, Hunter, who died from a disorder called Krabbe Disease.
This past week, Hunter's Hope hosted a symposium for researchers, physicians, and families of children with diseases like Krabbe's.
WBFO's Sharon Osorio brings us the story of one Hunter's Hope family that's been through it all.
Zoey Moore, from Iowa, jumps into the pool at Beaver Hollow Conference Center in Java, while the annual Hunter's Hope Family & Medical Symposium takes place there. To look at Zoey, you'd never know she was born with a disease that could have landed her paralyzed. The six-year-old was born with Krabbe Disease, the same disorder that afflicted Hunter Kelly, the son of NFL Hall-of-Famer Jim Kelly.
While the state of Iowa does not test for Krabbe Disease with the heel prick given to all babies at birth, Zoey's parents knew to test her for Krabbe Disease because her big sister, Raegan, also had the disorder. Raegan was diagnosed late, and died at 19 months old. But Zoey's Krabbe Disease was found right away, and she was able to receive an umbilical cord transplant that saved the quality and length of her life.
"The only reason Zoey was ever tested was because of our first little girl passing away," says Zoey's mother, Amber Moore. "Without that, we would have just watched another child die. But thankfully because of Raegan, and although you hate to say it's a life for a life, but in reality that's what it was for us. We had to give up one to have another -- to give Zoey the chance that Raegan never had."
Zoey's mother, Amber, says no parent should have to go through that ordeal when the test for Krabbe Disease could be offered at birth. But each state offers different tests in the heel prick to newborn babies.
Hunter's Hope, founded by former Buffalo Bill Jim Kelly and his wife, Jill, is one of the driving forces urging universal newborn screening, which means all states would offer the same, full spectrum of tests from that heel prick -- including a test for disorders like Krabbe.
Jim Kelly travels around the country, speaking to governors, lawmakers, and -- as he puts it -- anyone who'll listen to him, about implementing universal newborn screening. And as a Hall of Fame football player, many people do listen to him -- much more than they would if he were an average concerned parent.
"They do just as much as we do, but we're the ones who get noticed, and it is sad," says Kelly. "I remember going to Pennsylvania, and the March of Dimes was a little bummed out that, they said, they'd been trying to get into the governor's office for over a year, and it took a quarterback coming in and being able to say a few words to the governor, and have legislation changed within a year. But if that's what it takes, I'm going to do it. Unfortunately you wish they (officials) would get it, and some do and some don't."
Children who genetically inherit Krabbe Disease lack a specific enzyme, which leads to the production of toxins in the brain. Hunter Kelly died at eight- and-a-half years old, which was considered a long life for a child with this disorder.
But now, an umbilical cord transplant like Zoey's, performed before the child shows symptoms of Krabbe Disease, is showing remarkable results.
"We went in for 10 days of intense chemo, went through an umbilical cord blood transplant, so they just take the cord blood from a healthy baby that's full of stem cells and they put them into Zoey, and those cells start doing the job that replacing the enzyme that she's missing," Moore recalls. "So it's rough. You don't want to put your child through that if you don't have to, but we watched the alternative, and we just knew this time there was hope that we never had with our first little girl."
Zoey will soon start first grade and she's cognitively normal. Mom says Zoey does sometimes get off balance a bit, and she's small for her age, but otherwise, this medical marvel is just a kid.
"I see life," says Moore. "I see everything that a normal child gets to experience. I get to see her when she's happy, see her when she's mad, when she's screaming at me. I mean, I get to see a normal kid, as compared to our first little girl who when she died at 19 months old, was blind and deaf and paralyzed, and no true function whatsoever . That's two totally different worlds from one blood test." "When you have families walking up to you parents, and they are holding their child in their arm and they're thanking you for the life of their children, then you understand why you do it," says Kelly. "We see it right in front of us. We see families walking up to us, holding their kids, that said if it wasn't for Hunter's Hope, change in legislation in Pennsylvania, New York, Arizona when you get the letters, and so many things, you know we're making a difference. And that's what it's about."
And the work toward more progress continues.