Laura always thought she’d get to watch her baby sister grow up, but instead she’s watching her die. Now she’s telling her story, and her sister’s story, in her memoir, “Run to the Light.”
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.
After graduating from college, Laura had a great job in marketing, a loving fiancé, and she enjoyed living in her hometown of Charlotte, so she could watch her much younger sister Taylor, only 7 years old, grow up. Laura hadn’t been happy back in high school when her mother had had another baby; she thought she and her brother should have been enough. But she quickly came to adore Taylor and doted on her, spending many weekends visiting her and taking her on trips and outings. Laura would take Taylor to Starbucks to study simple math with her, which Taylor just couldn’t figure out despite being unusually bright. The whole family went to the state fair and when Taylor tripped at a food vendor, they realized Taylor had a hard time seeing the stairs. They had some testing done and the family learned the shocking news: Taylor has Batten disease. A rare, fatal, genetic disease that would 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’d get to watch her die.
Laura threw herself into research, support and advocacy, co-founding a non-profit organization, Taylor’s Tale. The Charlotte, North Carolina-based public charity has funded groundbreaking medical research at top institutions and inspired legislation establishing the nation’s first rare disease advisory council (renamed Taylor’s Law in 2016). In 2008, Taylor became one of the first six people in history to receive an experimental stem cell transplant in Portland, Oregon. The surgery seemed to slow the course of her disease, but it wasn’t a cure.
Always an optimist, in grade school Taylor started running with Girls on the Run, completing her first 5K race after she’d gone completely blind. Inspired, Laura, a lifelong runner, began running in half marathons to raise money and awareness. And also to run away from the pain.
Laura knows the tragic way this story will end. But she also knows the delight that Taylor is, the joy she has brought into Laura’s life and others’, and Laura hopes to spare others the same torture, of watching a loved one slip away, piece by piece. Taylor can’t tell her own story, so Laura is.