Hunter’s Hope
When Hunter Kelly came into this world on February 14, 1997, his arrival was a joyous occasion for his parents, Buffalo Bills Hall of Fame quarterback Jim Kelly and his wife, Jill. The timing was particularly significant for the Kelly family: Hunter was born on the same day as his father, who had retired from the National Football League after the 1996 season with a rich and decorated career that featured an unprecedented four straight trips to the Super Bowl.
Kelly was the first (and still only) quarterback to start in four straight Super Bowls. But little did the Kellys know how much their world would change with the arrival of Hunter Kelly. Hunter was diagnosed with Krabbe Leukodystrophy, a rare neurological disorder so obscure that many medical journals failed to even list it among childhood disorders when Hunter was first diagnosed. Hunter lived to be 8 1/2 years old — far exceeding the average life expectancy of a child living with Krabbe disease. Since then, the medical community has seen solid strides made in the fight against the disease.
But there is still no cure. Roughly one in 100,000 children suffer from Krabbe disease, a degenerative disorder of the central and peripheral nervous systems. The disease greatly affects development of myelin sheath, a fatty covering that protects the brain’s nerve fibers. Many children diagnosed with Krabbe disease are not expected to live past their first birthday, and the average life expectancy (at the time) was 14 months. Hunter’s prognosis was slightly better, but his parents were told, best-case scenario, their first-born wouldn’t survive past his second birthday.
That didn’t deter the Kellys. With several goals in mind, the couple formed Hunter’s Hope in 1997, and now, 18 years later, the outlook for Krabbe disease patients is not nearly as bleak as it was when Hunter was born.
Jill Kelly says Hunter’s Hope was formed with the primary goal of saving as many children’s lives as possible from this deadly disease. “When we started this organization, we knew this wasn’t about Hunter and saving his life; it was about saving the lives of future children,” says Jill Kelly. “Hunter’s Hope is about a legacy of hope. His life, and, ultimately, his death, has provided hope for children and their parents through improved newborn screenings for diseases. It took our greatest pain, the suffering and eventual death of our son, for us to really learn the true meaning of being part of something bigger than ourselves.”
The organization also aims to: “ensure early detection through newborn screening of all possible diseases; to advocate for improved newborn screening standards across the United States; to fund research necessary for the treatment and detection of Krabbe and other Leukodystrophies; and to support affected families through assorted programs,” as stated on the organization’s website (www.huntershope.org).
At the time of Hunter’s birth, a diagnosis of Krabbe disease was akin to receiving a death sentence, says Jacque Waggoner, the Chief Executive Officer of Hunter’s Hope and the mother of Jill Kelly. Families who had a child diagnosed with Krabbe diesease had “no hope because there was no known cure. There was this attitude that you take home your child and watch him die,” Waggoner adds. “The outlook was often doom and gloom, and there wasn’t a lot of research being done. Because of Jim’s celebrity, we were able to open doors that others were not able to open. We were in a position to use that influence to help this desperate community that was searching for a cure for their loved ones. We brought life to this fight. A child may have a terminal disease, but is living and needs to be cared for as such.”
The hope started with expanding the number of diseases screened for by hospitals before a newborn is allowed to leave with his family. At the time of Hunter’s diagnosis, New York was testing for only eleven diseases while Pennsylvania (Kelly’s home state) required testing for only four diseases. Thanks to the tireless efforts of the Kellys, and of Hunter’s Hope, those numbers have spiked dramatically in the years following Hunter’s passing. New York now tests for 40 diseases, Pennsylvania for 29. New York first started testing for Krabbe disease in 2006. However, only New York and Missouri screen for Krabbe disease when a child is born. Four other states, Illinois, New Jersey, New Mexico and Pennsylvania have passed legislation to make testing for Krabbe and other Lysosomal Storage Diseases (LSDs) mandatory in the future. According to figures provided by the Wadsworth Center of the New York State Department of Health, of the 250,000 infants screened annually for Krabbe disease, testresults have led to the early detection of Krabbe disease in approximately 50 infants. Hunter’s Hope is aggressively working with 20 other states, trying to get those states to add LSDs to the list of required newborn screenings.
FORMER GOV. TOM CORBETT FROM PA SIGNING HANNAH’S LAW IN LATE 2014. HUNTER’S HOPE WORKED WITH HANNAH’S MOM, VICKI PIZZULO, TO GET THE LAW PASSED WHICH WILL ADD KRABBE AND 5 SIMILAR DISORDERS TO PA’S NEWBORN SCREENING PANEL.
Both Waggoner and Kelly say that when their efforts began, they were focused only on saving future families from having to go through the same heartbreaking fate they endured when Hunter passed away August 5, 2005. It was only after they started educating themselves on the practice of newborn screenings that they realized the shortcomings in the testing policies, and how many potentially life-altering diseases were being omitted from the list of mandatory screenings in each state.
There is still no cure for Krabbe disease, but recent advancements in the use of stem cell transplants have shown some success in infants who are treated before the onset of symptoms. This breakthrough provides hope for the Kellys, for Waggoner, and for the members of Hunter’s Hope. “Since 2006, there is not one child that was born in New York that had Krabbe disease and did not have the opportunity to receive treatment, and that is definitely progress,” Waggoner says. “Without the work we’ve been doing at Hunter’s Hope, generation after generation of children will continue to die from these diseases. The outcome for a child with any form of Krabbe disease is not good. They will die without treatment. The earlier the onset of the disease, the earlier they will die. But there is an increased sense of hope for families that go through the newborn screenings.”
Waggoner says research in Krabbe disease has advanced to the point that researchers believe a cure for the disease could be found within five years, a sentiment that was “unheard of” when her family originally took up this fight.
“The progress we have made in a short amount of time has been amazing, miraculous really,” adds Jill Kelly. “Everything we’ve done has been to honor the memory of Hunter and his brave fight against Krabbe disease. When people come up to us and thank us for the work our organization has done, it leaves us speechless. We see the pain in the parents’ eyes, and we know that pain. We are thankful to be the hope and the help for those families, because we definitely didn’t have that when we were going through Hunter’s fight.”
In 2013, to pay tribute to Hunter’s fight and to honor the hard work and dedication of Hunter’s Hope, Governor Andrew Cuomo declared February 14th (Hunter and Jim Kelly’s shared birthday) as Hunter’s Hope Day of Hope and Prayer for children in New York.
On the Saturday closest to Februray 14, the organization holds a special event inside the field house at One Bills Drive. This year the 17th Annual Hunter’s Hope Day of Hope and Prayer for Children event will fall on Saturday, February 14th from 1-4 pm. There will be free admission, activities, food and drink, entertainment and fun for area children and their families.
The foundation also encourages supporters across the country to participate in a virtual Day of Hope and Prayer for Children by sharing their prayers and support through their individual social media pages.
For more information on Hunter’s Hope, or to make a donation to the fight, visit
www.huntershope.org, or call (716) 667-1200.
John Boccacino is a freelance writer and monthly contributor to Rochester Area & Genesee Valley Parent Magazine. He is currently the Director of Sports Information for Keuka College. He lives in Webster, NY.
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