Jim Kelly threw for over 35,000 yards and led the Buffalo Bills to four straight Super Bowls, but the hardest fight of his life happened off the field.
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His son Hunter was diagnosed with Krabbe Leukodystrophy at a few months old; he made it to eight years. Nearly two decades later, Jill Kelly, Jim’s wife, is opening up about that loss, and the newborn screening fight it started.
“I said “obvious” in the previous comment. But maybe it’s not obvious…maybe you didn’t know that our son, Hunter, died when he was 8 yrs. old,” Jill Kelly wrote on her Instagram story. “If he would have been screened at birth for the disease he had (Krabbe Leukodystrophy) he would have been able to receive life saving treatment and perhaps he would be here TODAY!”
On Thursday, the Kellys backed Congressman Nick Langworthy to introduce a new bipartisan bill aimed at making sure other families don’t go through what they did.
The bill, called the Surge to Save Newborns Act, would give states federal funding to put newborn screenings into practice. Right now, there’s a national list called the Recommended Uniform Screening Panel (RUSP) that flags serious conditions babies should be tested for at birth. The bill would help states that needed funding to conduct the screenings on a larger basis.
Jim Kelly and Jill learned that the hard way.
“When our son Hunter was diagnosed with Krabbe disease, we learned firsthand how devastating it is to receive a diagnosis after the window for disease-altering treatment has already closed,” he said.
Langworthy echoed that urgency in his own statement, calling newborn protection one of society’s most basic responsibilities.
“We already have the technological advancements to detect serious conditions –now we must do everything in our power to ensure that every single newborn has access to them,” Langworthy said in a statement.
“Adding a condition to the federal recommended panel is a good first step, but we need to make sure that states have the resources to put the screenings into practice. This bill will literally save lives and help get these precious babies into treatment before it’s too late. We have to get this done.”
If passed, the legislation would direct $35 million a year from 2027 through 2031 toward helping states build out their screening infrastructure so newer conditions on the RUSP can actually reach families sooner rather than years down the line.
For Jill, the motivation behind supporting this bill has nothing to do with politics.
“We support this bill for obvious reasons. Yet, people have to find a way to make it about their own political agenda etc. We don’t align ourselves with an agenda, party or person. We align ourselves with the only One who is greater than all of this. To God be the glory” she wrote.
Hunter was special in the Kelly family. He shared a birthday with his father, February 14. Jill Kelly also wrote that Hunter’s birth was a massive gift to Jim, who is one of six brothers; she had secretly hoped their second child would be a boy.
It has already been 20 years since Hunter passed away, but Jim and Jill Kelly still make it a point to honor his memory. Recently, the former quarterback was celebrated with a football field in his name, but it also carried Hunter’s initials on the ground.
“Having Hunter’s initials on the field makes it even more special,” he wrote in an Instagram post. “No one has impacted and changed lives quite like my son Hunter, and having a piece of him forever on this field means everything to me.”
Jill says the mission is far from finished, and it’s time for lawmakers everywhere to stop waiting and do something about it.
Through it all, Hunter’s short life continues to shape a much longer legacy, one the Kellys hope will keep saving newborns long after the headlines fade.