Latest news with #KrabbeLeukodystrophy
New York Post
15-07-2025
- Sport
- New York Post
Jim Kelly dealing with ‘darkest days' during newborn grandson's health emergency
Bills legend Jim Kelly and his family are asking fans for prayers amid heartbreaking news about the health of Kelly's newborn grandson. The quarterback's grandson, who was born last week, is dealing with 'unexpected medical conditions,' according to a Bills statement from last Thursday. On Monday, Kelly, 65, reposted the statement on Instagram, writing as part of a lengthy caption: '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.' Advertisement The news comes 20 years after Kelly's son, Hunter, died at age 8 in August 2005 after being diagnosed with Krabbe Leukodystrophy. Hunter's condition and tragic death inspired Kelly and his wife, Jill, to launch a foundation, Hunter's Hope, that researches treatments for Krabbe Leukodystrophy and broadens public awareness about the disease. Advertisement 3 Jim Kelly (left) with his daughter, Erin (middle), and her husband, Parker (left). Instagram/ekelly1212 'We've felt your support and prayers through some of the darkest days of our lives — and we'll never be able to thank you enough,' Kelly added in his post. 'Your kindness towards our family and your prayers have reminded us that we're not alone…Well, we need your prayers again.' 3 Erin Kelly-Bean and her husband Parker Bean. Instagram/ekelly1212 Kelly's post included photos of two bible verses: Isaiah 46:4, which reads, 'I have made you. I will carry you, I will sustain you and I will rescue you,' and Isaiah 43:2, which says, 'When you go through deep waters I will be with you.' Advertisement The post elicited an outpouring of support from Bills Mafia and the NFL world as a whole, including comments from fellow Buffalo legend Thurman Thomas, former Bills receiver David Nelson and former Bills nose tackle Harrison Phillips. 3 Jim Kelly with the Bills in Super Bowl XXV in 1991. AP Kelly, a Hall of Famer, played all 11 of his NFL seasons in Buffalo. He's best known for leading the Bills to four consecutive Super Bowl appearances, from 1991-94. 'Thank you for standing with us. Thank you for praying,' Kelly's post added. 'We need it more than ever.'
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.
