I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. Somewhere along the way, my life before Batten disease dropped out of sight in the rear-view mirror. I cried less and less. Mostly, I stayed angry. I’m still angry, which is good in a way, because it makes me want to fight like hell. Sadness doesn’t get me anywhere. Lately, I’m feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide. Mostly, it’s working. I cry very little, but when I do—it’s epic.
Laura has it all: a great job, a loving family, a new husband, and a house in her hometown, where she can watch her sister, Taylor, grow up. But one month after her wedding, Laura and her family receive shocking news: Taylor has Batten disease. A rare, fatal disease that will cause Taylor to go blind, suffer seizures, and lose the ability to walk and talk. There is no cure. Laura thought she’d get to watch her baby sister grow up, but instead she’ll have to watch her die.
Unwilling to take no cure for an answer, Laura founds a charity with family and friends, Taylor’s Tale, to save children with the disease. Meanwhile, Taylor starts running, completing her first race blind. Inspired, Laura, a lifelong runner, begins running in half marathons to raise money and awareness. And also to run away from the pain.
Taylor’s Tale becomes a world leader in the fight against Batten disease, but not quickly enough to save Taylor. Stripped of her faith, Laura falls into a dark despair. But Taylor’s unwavering courage in the face of certain death gives Laura a renewed sense of purpose to turn her family’s tragedy into an opportunity–to ensure others won’t have to suffer as her sister has suffered.
Run to the Light is Laura’s inspiring account of how she found the courage to face indescribable loss, and of what it means to really believe.
The Running Around Charlotte podcast, produced by the Charlotte Marathon, featured the book in its June 26, 2019 episode. You can listen to the entire episode here.