Posted Laura King Edwards on 9/7/2018 |General
Ten years ago, my little sister, Taylor, came home from school and announced that she wanted to join Girls on the Run. In doing so, she followed nearly 1 million girls across the nation who had gained more confidence, developed strength of character and trained to participate in a 5K event — all while having fun.
Except my sister was different.
Taylor, then 10, 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 several weeks into the 2008-2009 Girls on the Run season, she wasn’t just scraping by — she was leading her teammates in songs and cheers and free-spirited laps around the track.
A lifelong soccer player, I’d always run for fitness. But watching my sister, who is blind, cross the finish line of her first 5K event on a cold December morning had a profound impact on me. The following spring, I ran my first race in her honor, and I haven’t looked back.
Five years later, in 2013, I did something I’d never dreamed possible: I ran the Thunder Road Half Marathon (now known as the Novant Health Charlotte Half Marathon) blindfolded, crossing the finish line in less than two hours. The story gained national media attention for Taylor’s Tale, the charity I co-founded in my sister’s honor, and launched a movement that continues today.
Here's a secret you won’t read or hear in most of those stories: before I ran a half marathon blindfolded, I almost hit rock bottom. I almost quit the fight. I’d realized all of our charity’s hard work had come years too late to help Taylor, and most days, I struggled to face that reality.
But learning to see the world through the eyes of my sister 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. With the support of a lot of smart people and good friends, I helped Taylor’s Tale build a legacy of groundbreaking medical research and rare disease advocacy that could, in turn, help save the lives of millions of future Taylors.
Five years after crossing the finish line blindfolded, 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 course purple for Taylor on November 3. We’ll have an official team (join us at bit.ly/run4taylor), but you can also honor my sister’s courage simply by wearing something purple that 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 I-can-do-anything attitude and her Girls on the Run experience. I hope the message rings true for you and your daughters, students or team members as you train, learn and grow together.
That first magical blindfolded race in 2013 didn’t save my sister’s life, but it saved mine — and since it all started with Girls on the Run, I owe my life to this incredible organization, too.