Latest news with #KrabbeDisease
Miami Herald
07-08-2025
- Health
- Miami Herald
Jim Kelly posts heartbreaking tribute for son Hunter 20 years after his death
Jim Kelly is remembering his son Hunter on the 20-year anniversary of his death. The 65-year-old Hall of Fame quarterback, who spent his entire 11-year NFL career with the Buffalo Bills, per ESPN, shares two daughters — Erin and Camryn — with his wife of 29 years, Jill Kelly. The couple also share a son Hunter, who died of Krabbe disease on Aug. 5, 2005. He was 8 years old. 'Words are simply not enough to express how my heart is today,' Jim Kelly wrote in a caption on Instagram alongside photos of him and Hunter. 'So many things going in and out of my mind especially this last month. I can only reach out and ask people for prayers,' he added in the Aug. 5 post. In the final slide, Jim and Jill Kelly are seen wearing black T-shirts with 'Hunter' written on them. 'Hunter, I can't wait for the day that I get to join you in heaven. But I have a lot of loving to do right here at Home. I MISS YOU HB,' he continued. Jill Kelly also took to Instagram to post a tribute for Hunter. 'How can it be 20 years without Hunter? How can it feel like just yesterday and a million days ago? How did we walk through that heartbreak and survive?' she wrote in the caption. 'Not a single day has passed without thinking of Hunter, missing him and wishing he was here,' she added. Hunter, who shares a birthday with his father, was born on Feb. 14, 1997. At the time, he was diagnosed with Krabbe leukodystrophy. According to the Cleveland Clinic, Krabbe disease 'is a rare, inherited condition that affects the myelin that covers and protects your nerve cells, causing neurological issues.' It occurs in about 1 per 250,000 live births in the United States, per the Cleveland Clinic. There's no known cure for the disease. Despite being given no more than three years to live at the time of his diagnosis, per ESPN, Hunter went on to live well beyond his 8th birthday. He also inspired his parents to establish the Hunter's Hope Foundation in 1997, per its official website. The nonprofit has raised millions of dollars to 'address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies,' per its 2024 annual report. It also strives to 'support and encourage those afflicted and their families as they struggle to endure, adjust, and cope with the demands of these fatal illnesses,' per the report. Jim Kelly's tribute comes one month after another tragedy in the family. In July, Jim Kelly's daughter, Erin, welcomed her first baby with her husband, Parker Bean. Later that week, Jim Kelly took to Instagram with a heartbreaking update. 'Well, we need your prayers again,' he wrote in a July 13 Instagram post. 'We never imagined we would be here in this place of heartbreak and suffering again. Please pray for our daughter Erin, her husband Parker, and their precious newborn baby boy,' he added. Jim Kelly didn't elaborate on the details but clarified that his grandson was born with 'unexpected medical complications.' The family has kept their fans in the loop ever since, with Jim Kelly's latest update coming on Aug. 3. 'Watching Erin and Parker walk through this is heartbreaking,' he wrote in the caption. 'It puts everything in perspective and reminds us again and again that we are not in control.' 'The doctors have decided to pause any changes until August 11th, to give Little Bean time to grow, rest, and get stronger,' he added. 'They're holding off on taking him off his medication until then.'
Yahoo
12-02-2025
- Health
- Yahoo
8-year-old in Stokes County fights rare brain disease
WALNUT COVE, N.C. (WGHP) — To know Bentley Shelton is to love him. 'He brings light to everybody that meets him,' said Brittany Shelton, Bentley's mom. 'He always smiles.' At 8 years old, Bentley faces more challenges than most kids his age. But it wasn't always that way. Parents of separated conjoined twin daughters rely on faith after son's pediatric cancer diagnosis 'He was born like a normal kid. He started walking at age one,' said Shelton. 'For a year, he climbed on top of things, he'd climb up on tables and everything. And then he just kind of started being clumsy and when I went back and looked at videos, and I knew what to look for I noticed signs; his knees would hyperextend, his ankles were not 90 degrees, and it was causing him to just not walk properly. Six weeks after those initial signs showed up, Bentley was diagnosed with Krabbe Leukodystrophy, a rare genetic disorder that causes progressive damage to the nervous system. Bentley is one of nearly 30 million Americans who live with a rare disease. 'He has to fight really hard to maintain what he has,' said Shelton. 'Every day is a constant struggle.' There is no cure for Krabbe, and treatment is limited to a stem cell transfer which Bentley underwent in Pittsburgh right after he was diagnosed. High Point teen undergoes special surgery with determination, a smile 'He has essentially lost his ability to walk. He loves to try so we help him, but he can't do it unassisted,' said Brittany. 'It did affect his vision. He was diagnosed with cortical visual impairment which I've kind of understood to be your eyes work fine, but your pathway doesn't. So, he looks at something and he can't process it… everything is just jumbled.' In late January, the Shelton family received another blow. A promising clinical trial involving gene therapy that Bentley was waitlisted for was abruptly canceled. Brittany turned to Facebook to share the devastating news. 'I think the more noise you make, the more people become aware,' said Brittany. 'That's really the only thing you can do.' Her post has been shared hundreds of times, and she's heard from people who work with pharmaceutical companies offering advice. 'I was just praying that someone would see it… that a pharmaceutical company would see it and take interest and see that these are real kids out there that have it and hopefully pick it back up and restart it.' It feels like a relentless race against time that Shelton is determined to help Bentley win. Micro-preemie twins born in Triad beat the odds, set to come home from hospital 'Science tells us you don't live a full life, but you know God tells us another thing, so we're hoping and praying for other treatments to become available,' said Shelton. 'It's a rare disease but it's one in 100-thousand and when you compare that to the whole population, that's a lot of kids. That's brothers, sisters, sons and daughters.' The Krabbe Disease clinical program by Forge Biologics was scheduled to run until November 2026. FOX8 reached out to Forge Biologics to find out what led to the program's cancellation, but we haven't heard back. Krabbe disease is not on the newborn screen in North Carolina. It is, however, part of newborn screenings in several other states including South Carolina and Tennessee. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
