Krabbe disease added to newborn screening panel in victory for Hunter’s Hope, Jim Kelly’s family
BUFFALO, N.Y. (WIVB) — The Federal Newborn Screening Advisory Committee voted to add Krabbe Leukodystrophy Disease to the recommended newborn screening panel (RUSP), which is a huge victory for Hunter’s Hope.
The federal panel voted 10-3 to add the disease to the RUSP. Tuesday was the third time Krabbe was up for vote by the panel of experts. After the recommendation passed, it will now go to the Secretary of Health for final approval and then be added to the federal list.
Hunter’s Hope calls this a bittersweet victory because the organization has fought for decades to add treatable leukodystrophies to the newborn screening panel. It hopes this victory can ultimately help families and save lives.
“This is evidence that what we are doing is making a difference,” Jill Kelly, founder of Hunter’s Hope, said. “It’s bittersweet honestly to know that so many children have had to suffer for this to become a reality, including our son Hunter.”
“It’s been so long. We’ve been fighting so much for this,” Jim Kelly added.
Jim and Jill Kelly founded Hunter’s Hope in 1997 after their son, Hunter, was diagnosed with Krabbe when he was just a few months old. Most children who have this disease do not live past their second birthday. Hunter defied the odds, and lived for more than eight years. He died in August of 2005.
Newborns are screened for several diseases after birth, which is a national requirement. The diseases in the newborn screening panel vary by state, but typically follow the federal recommendations. By adding Krabbe to the RUSP, children can be tested and treated for the disease before it develops.
“It has to be done before the child is symptomatic of the disease and so, that’s why newborn screening is key because no one would know they are a carrier of the disease, it’s so rare,” Anna Grantham, director of newborn screening for Hunter’s Hope, added.
Children who develop symptoms quickly lose voluntary and basic functions. For children who are tested early and can get treatment, they can live a healthy, normal life.
“You have a child who literally, usually, doesn’t live beyond the age of two and loses basically all voluntary and basic functions,” Grantham explained. “For the children who are diagnosed early and treated, these kids go to school, they play, they talk, they live.”
Jim Kelly says this is about giving dreams and hope back to families so that they can fulfill ‘Hunter’s Hope.’
“My son never got a chance to fulfill those dreams of maybe doing what daddy did or whatever the case may be. Give these kids a chance to dream,” Kelly said.
Right now, almost a dozen states, including New York, test for Krabbe in newborn screening. With this federal vote on Tuesday, more states will likely add it to their screening panel in the next few years.
“We’ll continue to fight, and continue to persevere to make sure that every child born in our country is tested for treatable diseases, all of them,” Jill Kelly said.
“Make a difference today for someone who is fighting for their tomorrow. Every child with Krabbe, every child with a handicap, they are fighting for each and every day. Give that hope to these parents to never give up on their child,” Jim Kelly continued.
Latest Local News
Cheektowaga man arrested in connection with multiple Buffalo burglaries
BPS teacher gifted Super Bowl tickets after saving woman with CPR
Thank the ‘omega block’ for our period of calm weather
Could snail mail get slower in Western New York?
Very breezy, light mix and drizzle goes to flurries
Tara Lynch is a Buffalo native and Emmy-nominated reporter who joined the News 4 team in 2022. She previously worked at WETM in Elmira, N.Y., a sister station of News 4. You can follow Tara on Facebook and Twitter and find more of her work here.
For the latest news, weather, sports, and streaming video, head to News 4 Buffalo.
