Pushing for Newborn Screenings
By ANNE HOLLIDAY
WESB/WBRR News Director
When his son was diagnosed with Krabbe Disease, Hall of Fame quarterback Jim Kelly could have wallowed in self-pity and focused on dreams that would never come true.
Instead, with encouragement from his wife Jill, he started a foundation and mounted a campaign to make sure other families don't have to go through what his did.
When Hunter Kelly was born on February 14, 1997 – his famous dad's 37th birthday – the just retired NFL quarterback thought about all the things father and son would be doing together as the little boy grew up.
It wasn't long before the Kellys realized Hunter "was having a lot of difficulties," he said during a news conference in Harrisburg earlier this month.
"I could tell you all the problems he had but there would be a lot of tears shed," Kelly said, "because they'd be coming from me."
Hunter was four months old before he was diagnosed and, by that time, it was too late for doctors to do anything for him.
Hunter died in August of 2005.
When the Kellys learned of Hunter's diagnosis, Jim Kelly says he "wasn't very happy. I blamed everybody else. I was mad."
But Jill – who he called "the Mother of the Year every day of her life" – launched the idea for what would eventually become the Hunter's Hope Foundation.
"My wife told me – 'Jim, if there was ever a time for you to use your name, it's now. Let's not hide behind this."
"That's exactly what we did," Kelly said.
Hunter's Hope was started to increase public awareness of Krabbe Disease and other leukodystrophies, as well as to increase the likelihood of early detection and treatment.
When Hunter was born, New York only did 11 tests on newborns. Now they do 45.
The Foundation’s goal is to fund research efforts to identify new treatments, therapies and a cure for Krabbe Disease. To date, through the Foundation over $14 million has been awarded to leukodystrophy and other neurological disease related research.
Kelly was in Harrisburg to push for passage of The Newborn Child Testing Act, sponsored by State Representative George Kenney.
During the news conference, State Senator Jane Orie said, "Each and every baby born in Pennsylvania deserves a chance for a healthy start."
She added that Pennsylvania ranks "dismally" when it comes to newborn screenings and, as Governor Ed Rendell pushes his healthcare proposlas, there's no better bill to support than House Bill 883.
James Dennis, state director of the March of Dimes, which has partnered with Hunter's Hope, said "Newborn screening is vital."
"It is our goal to assure that every newborn in Pennsylvania has access to life-saving screening as early as possible," Dennis said.
Kelly said it would be easy for him to focus only on Krabbe Disease, but he "saw all these other kids suffering because they were born in the wrong state."
"We are going to save the lives of thousands and thousands and thousands of kids," Kelly said. "There are too many kids going undiagnosed and dying because they were born in the wrong state."
"We're not going to let that happen, especially right here in the state I grew up in," said Kelly, a native of East Brady.
Kelly says he will be making his way across the country to encourage all states to increase the number of newborn tests they require.
"I understand that I am the voice of all those parents out there that can't have their voice heard," he said. "I'm not stopping 'til it's done."
Before ending his remarks, Kelly thanked his "little buddy upstairs."
The Newborn Child Testing Act (House Bill 883) has passed the House unanimously and is currently in the Senate Appropriations Committee.
Orie said she hopes the bill passes the senate and makes it to the governor's office before the end of the month.
You can help the bill along by writing to:
Senator Joe Scarnati
Senate Box 292
Main Capitol
Harrisburg, PA 17120
WESB/WBRR News Director
When his son was diagnosed with Krabbe Disease, Hall of Fame quarterback Jim Kelly could have wallowed in self-pity and focused on dreams that would never come true.
Instead, with encouragement from his wife Jill, he started a foundation and mounted a campaign to make sure other families don't have to go through what his did.
When Hunter Kelly was born on February 14, 1997 – his famous dad's 37th birthday – the just retired NFL quarterback thought about all the things father and son would be doing together as the little boy grew up.
It wasn't long before the Kellys realized Hunter "was having a lot of difficulties," he said during a news conference in Harrisburg earlier this month.
"I could tell you all the problems he had but there would be a lot of tears shed," Kelly said, "because they'd be coming from me."
Hunter was four months old before he was diagnosed and, by that time, it was too late for doctors to do anything for him.
Hunter died in August of 2005.
When the Kellys learned of Hunter's diagnosis, Jim Kelly says he "wasn't very happy. I blamed everybody else. I was mad."
But Jill – who he called "the Mother of the Year every day of her life" – launched the idea for what would eventually become the Hunter's Hope Foundation.
"My wife told me – 'Jim, if there was ever a time for you to use your name, it's now. Let's not hide behind this."
"That's exactly what we did," Kelly said.
Hunter's Hope was started to increase public awareness of Krabbe Disease and other leukodystrophies, as well as to increase the likelihood of early detection and treatment.When Hunter was born, New York only did 11 tests on newborns. Now they do 45.
The Foundation’s goal is to fund research efforts to identify new treatments, therapies and a cure for Krabbe Disease. To date, through the Foundation over $14 million has been awarded to leukodystrophy and other neurological disease related research.
Kelly was in Harrisburg to push for passage of The Newborn Child Testing Act, sponsored by State Representative George Kenney.
During the news conference, State Senator Jane Orie said, "Each and every baby born in Pennsylvania deserves a chance for a healthy start."
She added that Pennsylvania ranks "dismally" when it comes to newborn screenings and, as Governor Ed Rendell pushes his healthcare proposlas, there's no better bill to support than House Bill 883.
James Dennis, state director of the March of Dimes, which has partnered with Hunter's Hope, said "Newborn screening is vital."
"It is our goal to assure that every newborn in Pennsylvania has access to life-saving screening as early as possible," Dennis said.
Kelly said it would be easy for him to focus only on Krabbe Disease, but he "saw all these other kids suffering because they were born in the wrong state."
"We are going to save the lives of thousands and thousands and thousands of kids," Kelly said. "There are too many kids going undiagnosed and dying because they were born in the wrong state."
"We're not going to let that happen, especially right here in the state I grew up in," said Kelly, a native of East Brady.
Kelly says he will be making his way across the country to encourage all states to increase the number of newborn tests they require.
"I understand that I am the voice of all those parents out there that can't have their voice heard," he said. "I'm not stopping 'til it's done."
Before ending his remarks, Kelly thanked his "little buddy upstairs."
The Newborn Child Testing Act (House Bill 883) has passed the House unanimously and is currently in the Senate Appropriations Committee.
Orie said she hopes the bill passes the senate and makes it to the governor's office before the end of the month.
You can help the bill along by writing to:
Senator Joe Scarnati
Senate Box 292
Main Capitol
Harrisburg, PA 17120
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