Rolf Hill and Katie Burrows are the proud parents of three amazing daughters who seemed limited only by their imaginations – spirited, empathetic and intellectually curious. But when Rolf and Katie became concerned about their oldest daughter’s decrease in coordination and balance, it led to a November 2015 diagnosis they never expected for a disease they had never heard of – Friedreich’s Ataxia (FA). A rare, debilitating, life-shortening, degenerative neuro-muscular disease that affects 1 in 50,000 people, FA threatens an uncertain future. Symptoms include a loss of coordination (Ataxia) in arms and legs, energy deprivation and muscle loss, slurred speech, vision impairment and hearing loss, aggressive scoliosis, serious heart conditions and diabetes.
Less than one year later, and now with the experience and ability to see the most minimal indications of FA, Rolf and Katie grew similarly concerned about their youngest daughter. In October 2016, genetic testing confirmed that she also has FA. While each of their daughters is strong in spirit, they know that there is much work to be done. With immeasurable and unwavering support from their friends and families, Rolf, Katie and their girls are committed to helping other families better understand FA and find a cure.
With approximately 9 ongoing clinical trials, hope in the FA community has never been greater. Doctors and researchers no longer say “if we find a cure,” they say “when we find a cure.” Rolf, Katie and their daughters would be forever grateful for your help in finding a cure – with more funding for research and clinical trials, they hope to speed it up!