Kentucky family raising awareness of potentially fatal disease if not caught at birth

LOUISVILLE, Ky. (WDRB+WAVE) — A little boy is alive today because of the state he was born in. Ten years ago, Kentucky was one of the first states to test newborns for Krabbe, a rare genetic disease. Without early detection, it can be fatal. Tygh DeRossett is that little boy. When you see his smile, it's impossible to not smile back. His grin is so pure and beaming with joy. But his parents may have never seen that smile if he wasn't born in Kentucky. 'Kentucky had just started newborn screening for that disease,' Amanda DeRossett recalled. Back in 2016, Amanda and Aarron DeRossett were living in Tennessee on the state line, but decided to give birth at a Kentucky hospital. Unbeknownst to them, Kentucky had just started newborn screening for Krabbe disease, which affects 1 in 100,000. According to Krabbe Connect, if a newborn doesn't get diagnosed soon enough to get a stem cell transplant, life expectancy is less than two years. If a newborn is not tested at birth, common signs of the disease can be severe colic and not meeting certain milestones around 3 or 4 months old. 'By the time they figure it out it's too late,' Amanda DeRossett said. Krabbe is a neurological condition that prevents the body from keeping a protective covering around nerve cells. 'It's like these nerve firings. And they eventually lose the ability to do everything. So they start losing their sight, some of them lose the ability to swallow, breathe on their own,' Amanda DeRossett said. A total of 18 states are currently newborn testing for Krabbe. They include New York, Missouri, Ohio, Kentucky, Tennessee, Illinois, New Jersey, Indiana, Georgia, Pennsylvania, South Carolina, Minnesota, Maryland, Iowa, Texas, Kansas, New Mexico and Oregon. Once Tygh was diagnosed, he started chemo at just eight days old to prepare for his stem cell transplant. He spent the first six months of his life in North Carolina at Duke University Hospital getting treatment. Tygh is now 9 years old, soon to be 10. Like most little boys, he loves watching YouTube, especially cooking videos and 'The Gummy Bear Show.' But Tygh has never been able to walk on his own. So his family is asking the community to step up and walk for him and so many others in Shepherdsville on Sept. 26. They have one goal — raise awareness and money for a cure and to support others impacted by this disease. All money raised will go to Krabbe Connect. 'That's why it's so touching because that's what they do. They get this law passed so that you have the option to choose to save your child.' Amanda DeRossett said. 'Had I had him in Tennessee, I would not have had that option.' Tygh's future is unclear. The disease is still present, but progresses more slowly. But one thing's for certain — he is a resilient little boy. And that big beautiful smile of his is a gift, especially with this disease. 'That's one of the first thing that goes is their smile,' Amanda DeRossett said. And his life is such a gift to others — raising awareness and offering hope to those who might need it most. Tygh's Strides 5K walk/run is happening Sept. 26 at Shepherdsville City Park. Check-in starts at 7:30 a.m. with the walk starting at 9 a.m. Various items will also be raffled off to raise money. Copyright 2026 WDRB+WAVE. All Rights Reserved.