Laura King Edwards is a writer, runner, rare disease advocate and content marketing professional. In 2017, she spoke at TEDxCharlotte about running a half marathon blindfolded and fighting her sister’s rare brain disease. Her first book, “Run to the Light,” will be published on November 1, 2018.
Ten years ago, my little sister, Taylor, came home from school and announced that she wanted to join the Girls on the Run team at The Fletcher School, where she was a fifth grade student.
But my sister was different from the other girls on her team.
That’s because Taylor suffered from a rare, fatal brain disorder called Batten disease. The disease had already stolen her vision and would one day take her life. But Taylor had no fear. And when she decided to join the team, her school and the team’s coaches came up with a plan to make it happen. Seventeen-year-old Mary-Kate Behnke agreed to be Taylor’s sighted guide and attended the team’s first practice.
That day marked the beginning of my sister’s journey as a blind runner.
Several weeks into the 2008-2009 Girls on the Run season, Taylor wasn’t just scraping by — she was leading her teammates in songs and cheers and free-spirited laps around the track. Her attitude guided the girls’ shared journey and inspired adults who admitted they’d be too scared to attempt the challenge my 10-year-old sister relished.
A lifelong soccer player, I’d always run for fitness. But watching my blind sister cross the finish line of her first 5K race on a cold morning, putting an exclamation point on the team’s fall season, had a profound impact on me. The following spring, I ran my first race in Taylor’s honor, and I haven’t looked back.
For five years, I entered 10Ks, 10-milers and half marathons, all in my home state of North Carolina. Though already a strong athlete, I had to grow into my new role as a distance runner. When I crossed the finish line of my first half marathon in late 2009, two hours and 35 minutes after the starting gun, I felt breathless and dizzy and mentally drained. (Since then, I’ve shaved 51 minutes off my half marathon PR and won age group awards in multiple distances.)
But something else happened during that five-year period: my sister got sicker. As I watched Taylor struggle, I battled injuries from 50-mile weeks along with a growing despair, borne from the new knowledge that even if I somehow helped beat Batten disease, I couldn’t do it in time to save my sister. I was still going to lose her, no matter how fast I ran or hard I worked.
Even so, in 2013, I had a lot to be excited about. Taylor’s Tale, the charity I co-founded in Taylor’s honor, had made incredible strides in the fight against Batten disease, including funding a promising new gene therapy project at the University of North Carolina. But I was so burned out and so fearful of watching my sister die that I almost quit.
Then, one night at the end of an otherwise ordinary run, I knew what I had to do. I had to run a race like my sister had — blind.
My friend, Andrew Swistak, agreed to be my guide. For five months that summer and fall, Andrew and I trained together on the streets of South Charlotte. I became a blind runner. I learned to face my demons by turning out the lights. And on November 16, 2013, Andrew guided me to the finish line of the Thunder Road Half Marathon (now Novant Health Charlotte Half Marathon) in less than two hours. The story gained national media attention for Taylor’s Tale and launched a movement that continues today.
Running couldn’t save Taylor. But it saved me. What’s more, my turn as a blind runner taught me to embrace our family’s tragedy — Batten disease — and transform it into an opportunity to create change the only way I know how.
Five years after crossing the finish line blindfolded that first time, I’ve helped Taylor’s Tale foster incredible progress for people fighting rare diseases, including a fast-approaching gene therapy clinical trial for kids like my sister as well as the passage of “Taylor’s Law,” which established the nation’s first rare disease advisory council.
Meanwhile, I’ve run races in 21 states, shared my story at TEDxCharlotte and even written a book, “Run to the Light.” In a serendipitous twist of fate, the memoir will be published on November 1, two days before the 2018 edition of Charlotte’s biggest race — now different in name, but still the same event that started it all.
That’s why, at this year’s Novant Health Charlotte Marathon, I’ll put on the blindfold again and attempt to run 13.1 miles without the gift of sight. This time, I’ll do it about six weeks after giving birth to my first child. I can’t wait to tell my son all about his Aunt Taylor’s incredible courage. And while my sister is far too sick to join me on the course, I know I’ll feel her presence from start to finish.
If you live in or around Charlotte, I hope you’ll consider helping Taylor’s Tale turn the race purple for Taylor on November 3. We have an official team (join us at bit.ly/run4taylor), but you can also honor my sister’s courage simply by wearing something purple on race day, and by sharing her amazing story with at least one person. Meanwhile, in my book, “Run to the Light,” you can read Taylor’s full story: her life, her legacy and her I-can-do-anything attitude. I hope the message changes your own life for the better, as it changed mine.