Richmond’s Dave Faughn has been nominated for the 2019 Eagle Rare Life Award for his devotion to finding a diagnosis and cure for his 7-year-old daughter Katherine’s rare genetic disease, NUBPL.
If he wins, Faughn will receive $50,000 for the NUBPL Foundation, the non-profit he co-founded with wife Glenda McCoy to save his daughter’s life and others like her through cutting-edge genetic medical research.
Katherine was born in 2011 and developed normally until one. “Her motor development plateaued,” said Faughn. “She wasn’t walking, and Glenda really thought something was wrong.”
Her intuition proved correct, and Katherine began physical therapy at 18 months. Still unable to walk at her two-year pediatric check-up, she was referred to the Cincinnati Children’s Hospital’s neurology department, undergoing a brain MRI. Faughn received a doctor’s call with morbid results. Katherine’s cerebellum was abnormally small.
She was misdiagnosed with infantile neuroaxonal dystrophy (INAD). She was likely to die before her 10th birthday, after losing her ability to move, speak, swallow, see and hear. “The day I got that call was the worst day of my life,” said Faughn.