Jill Kelly, wife of Buffalo Bills Hall of Fame quarterback Jim Kelly, shared an emotional tribute on Instagram this week, one that speaks to a loss she and her family have carried for more than two decades.
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The post came through Hunter’s Hope Foundation’s “Share Their Story” campaign, a series honoring children affected by leukodystrophy, a group of rare, fatal neurological diseases. The featured story belonged to Jill’s own son, Hunter Kelly, shown as a baby in a photo captioned: “A beloved son and brother whose life continues to shine as a light of hope.”
Jill reposted it with a message of her own: “Thank you for everything, Hunter! I miss and love you so much!!” Jill wrote.
Credit: Instagram/@jillmkelly
Hunter Kelly was born on February 14, 1997, sharing a birthday with his father, Jim. Soon after birth, he was diagnosed with Krabbe Leukodystrophy, an inherited, fatal disorder that attacks the nervous system. Hunter passed away on August 5, 2005, at age 8. Jill’s message is not about a new tragedy. It comes from a grief the Kelly family has lived with publicly for nearly three decades.
That work started soon after Hunter was diagnosed. In 1997, Jim and Jill founded Hunter’s Hope Foundation. The foundation focused on research and support for families, while also pushing for one major change: adding Krabbe disease to the newborn screening panel given to every baby in America at birth. Jim has spoken about how limited their options were once Hunter’s diagnosis came too late for treatment to help.
“Things that we were going to do would not help our son,” Jim said, reflecting on how little could be done once the disease had already progressed past the point where early intervention works.
Krabbe disease is treatable if it’s diagnosed at birth, but the ramifications can be devastating if it’s diagnosed later. That’s why the Kelly family has fought for better screening for almost 20 years. On January 30, 2024, the federal government’s newborn screening advisory committee voted to include Krabbe disease on the national Recommended Uniform Screening Panel. Jim and Jill marked the moment with a joint statement that tied the victory directly back to Hunter.
“This is an amazing day!” the Kellys said. “Newborn Screening for Krabbe disease is the difference between life and death. If Hunter had been screened for Krabbe at birth, he might still be here today. Every child with Krabbe deserves the chance to live!”
The fight hasn’t stopped there. Federal approval doesn’t automatically mean every state has the funding or infrastructure to actually implement the testing, which is why the Kellys returned to Capitol Hill just last week, on September 25, 2026, teaming up with U.S. Representatives Nick Langworthy and Kim Schrier to introduce a new bipartisan bill called the Surge to Save Newborns Act.
The legislation would provide $35 million annually from 2027 through 2031 to help states bring in federally recommended screenings, including Krabbe. Jill has also spoken about how difficult it is to keep that fight going, especially with so few photographs of her son left.
“Every picture that we have, obviously, of Hunter is precious because we only have so many,” Jill said, holding one of those photos during a recent interview. “That’s it. We want every state to get up to par to make sure that every state is being tested for every single disease.”
That is also why Jill’s tribute still hits home. Hunter’s story remains part of the fight, even more than 20 years later. Jill is still sharing his story and pushing for newborn screening, while making sure people remember the son she still misses and loves.