When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
When Taylor was diagnosed with infantile Batten disease in 2006, the doctor advised my parents to take her home and love her. “There’s nothing you can do,” he said.
But giving up wasn’t good enough for them or anyone in my family, least of all Taylor. continue reading →