Okay fine, donate in loving memory of Hunter KELLY at:Originally posted by DLRDUDE
This is supposed to be a thread about the death of Hunter. What the fuck is wrong with you people....JEEZ!
Hunter'sHope
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FOCUS: HUNTER KELLY
A little boy, a local hero
In 8 years, Hunter Kelly led the fight against Krabbe disease - for others
By GENE WARNER and SRA TAN
News Staff Reporters
8/6/2005
Hunter Kelly gets a hug from his mother, Jill, shortly before his eighth birthday.
"He's just a . . . boy, with a very powerful spirit, who wants to play, who wants attention, who wants
Mommy to hold him."
Jacque Waggoner, Hunter's grandmother, in 2002
Some people considered it a cruel twist of fate, that the awareness - and dollars - Hunter Kelly helped raise to save other sick children came too late to benefit him.
His family never looked at it that way.
"Ultimately, the joy and the blessings outweigh all the heartaches and what-ifs and I-wish-this-could-have-happened-before," his mother, Jill, said in February when Hunter turned 8.
"I believe he will fulfill the purpose for which he was put on this earth, to bring hope to other people," she added. "I pray that instead of looking at the quality of life, that people would look at the sanctity of life."
Life for Hunter, son of famed Buffalo Bills quarterback Jim Kelly, ran out Friday morning, when he died after an 8-year battle with Krabbe disease. His death drew tributes from everyone from the Bills and their owner to Gov. George E. Pataki.
Hunter had some difficulty breathing and ran a high temperature Thursday, but that was not unusual. He stopped breathing Friday morning and couldn't be revived.
"The family, like with any parents who have lost a child, is devastated," said John Dudek, interim executive director of Hunter's Hope Foundation. "While this was expected for some time, it wasn't expected today."
Dr. Patricia K. Duffner, Hunter's pediatric neurologist at Women and Children's Hospital, was as surprised as anyone.
"After a while, you begin to kid yourself that he's going to go forever," she said. "He was such a tough little kid."
Survival broke records
Hunter, who had battled pneumonia 15 times in just his first four years, never got to toss a football with his father. But Hunter broke every record for survival.
His father, the quarterback with the toughness of a linebacker, called Hunter his hero.
When Kelly's name was placed on the Buffalo Bills Wall of Fame in 2001, he told the crowd he had wanted what every Dad wanted - to play catch and go hunting and fishing with his son.
"My son was born on Valentine's Day, Daddy's birthday," Kelly said, his voice cracking. "He won't be able to do what Daddy does. But with my son, so many kids are going to benefit from him. Today, that name up on that wall symbolizes the strength, the courage, the toughness of my son, my soldier, my hero, Hunter. I love you, buddy."
During his eight years, Hunter became a local hero, a symbol of hope and toughness for parents and children alike in Western New York.
"Hunter was able to effect change in the world without uttering a word," said Elizabeth Sands, a longtime family friend. "To know him was to know his love, the love he had for his family, the love he had for other children. . . . It was a privilege to be his friend."
Sands' son, Robert, saw Hunter at least once a week. Robert turned 8 Friday, the day his best friend died.
"He's doing OK," Sands said, choking back tears. "We made s'mores. We played Spider-Man, Uno, things he liked to do with Hunter. We're privileged that he has the opportunity every year to celebrate the life of his best friend."
Early diagnosis helps
Robert wasn't the only one touched by Hunter's life.
Little kids would send their whole 50-cent allowance to Hunter's Hope; tough-guy motorcyclists would support benefits for the same cause.
"He really brought the whole community together," Dennis DiPaolo, co-owner of Ilio DiPaolo's Restaurant and a friend of the Kelly family, said Friday. "Because of Hunter, I think people started looking at their children and realizing how lucky they are."
Krabbe, a rare, genetic, degenerative disease, destroys the white matter of the brain. When Hunter was born in 1997, most children with this condition never made it past 2 years old.
At age 8, Hunter couldn't walk, talk or even laugh. He barely could move his head. He communicated with others by blinking his eyes.
But now, partly because of the efforts surrounding Hunter, some children can get diagnosed early enough to get a life-saving transplant that can allow them to live almost normal lives.
Duffner, Hunter's doctor, marvels at the enormous legacy that continues to unfold because this boy was born. She recalled a family whose son was diagnosed before Hunter. Back then, the family could barely find three lines on Krabbe disease.
"It's been remarkable the things that have happened from one little boy," she said.
The Hunter's Hope Foundation has raised more than $4 million for research into Krabbe. Some of that money has yielded ground-breaking results in transplants of stem cells from umbilical cord blood that give children diagnosed early with the disease a shot at leading normal lives.
Jim Kelly also has used his celebrity status to lobby the state.
"It was Jim and Jill Kelly who last year, along with other parents of ill children, helped New York State establish the most comprehensive free newborn-screening program in the nation," Pataki said in news release.
With the foundation's $3 million donation to establish the Hunter James Kelly Research Institute, part of the developing Buffalo Niagara Medical Campus, children diagnosed early with Krabbe may be able to get life-saving cord blood transplants in Women and Children's Hospital in a few years, Duffner said.
Western New York already has become the mecca for families with Krabbe. Last month, 43 families of children with the neurodegenerative disorder came to Holiday Valley from around the world for the eighth annual Hunter's Hope symposium.
Remained a little boy
Anyone who spent any time around Team Hunter - his family, surrounded by therapists, nurses and teachers - marveled at the upbeat mood.
From the time Hunter turned 1, the family's goal changed, from keeping him comfortable for as long as he lived, to treating him like a living, breathing, disabled young boy with a lot to learn.
His family put him on a new diet and bombarded him with all kinds of therapy and education. Teachers and therapists quickly learned his signals: The single blink of the eyes that meant yes. A squint that meant he was concentrating. The relaxing of his hands, when he was happy.
And despite the public spotlight and the disability he had, family members worked hard to convince others that this still was a little boy.
"He's just a 5-year-old boy, with a very powerful spirit, who wants to play, who wants attention, who wants Mommy to hold him," his grandmother, Jacque Waggoner, said three years ago.
Other survivors include Hunter's two sisters, Erin and Camryn. A public funeral has been scheduled for 1 p.m. Tuesday in Hamburg Wesleyan Church on McKinley Parkway.
Friday, those who felt uplifted by Hunter and his constant struggle were devastated by news of his death.
"Among all his friends, we never even thought about this day," DiPaolo said. "It's almost like we never expected this day to come.
He added, "This kid, like his father said, was the toughest Kelly."
Bills owner Ralph C. Wilson Jr., attending the team's scrimmage Friday in Green Bay, Wis., offered his condolences.
"Jill and Jim were tireless in their efforts to help him in any way they could," Wilson said. "As far as this young man is concerned, I think Jim took it from his own 1-yard line and scored a touchdown."
"They fought so hard for eight years to help this young man survive, and in the meantime they did so much for future generations to promote research. . . . I guess the legacy of Hunter's life is he struggled as much as he did, but he promoted something that's going to help people from here on out through the funds that were raised.
"My heart really goes out to Jim and Jill because every time I saw Jim in the last eight years, which was many times, he spoke of Hunter."
News Sports Reporter Mark Gaughan contributed to this report.
e-mail: gwarner@buffnews.com
and stan@buffnews.com
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), about HUNTER had KELLY not been an NFL QB. Those are just the facts. I'm sorry that this happened to them and wish them the best, but fuck you and the horse you rode in on pal...This is just an internet thread, not a memorial service, nobody was harmed in it's making.
