In August, I connected with Debbie at Deb Runs. A wife, mom, runner and personal trainer, she leads a running group called the Cruisers. Her posts are entertaining and inspiring! If you have a chance, please check out Debbie’s blog. 

My sister’s story had an impact on Debbie, and she wrote about our journey on her blog after going on a 6.2-mile run in honor of Taylor’s 15th birthday. She followed my training for the Thunder Road Half Marathon, and earlier this fall, she asked if I’d be interested in writing a guest post for her blog after the race. Of course, I said yes! Following is the post I wrote that Debbie published on her blog earlier today.

In 2006, my then 7-year-old sister, Taylor, was diagnosed with a rare, brain-based disorder called Batten disease. Over time, kids with Batten disease lose their vision, cognitive skills, speech and other basic functions, like swallowing and walking. There is no known cure or effective treatment, and the disease is always fatal.

Two years after Taylor’s diagnosis, my sister, already blind and suffering from other effects of Batten disease, signed up for Girls on the Run at her school. An older student named Mary-Kate served as her sighted guide. Mary-Kate and Taylor each held one end of a jump rope so that Taylor could run like the other girls.

Taylor, Mary-Kate and their Girls on the Run team ran their first real 5K at Charlotte’s Thunder Road Marathon on a frosty day near the end of 2008. Mary-Kate told us Taylor stumbled and fell a few times, but each time, she pulled herself up and insisted on finishing the race. The pair reached the finish line in just under an hour.

To this day, watching my blind sister cross the finish line at Thunder Road remains one of the most moving things I’ve ever witnessed. I played soccer for 20 years and always ran to stay in shape. But running took on a new meaning for me that day at Thunder Road, and that following spring, I started running races for Taylor.  I ran my very first half marathon at Thunder Road, at the site of her incredible feat, in late 2009.

It’s been nearly five years since I watched my sister and Mary-Kate cross the finish line at Thunder Road, and though my sister remains as brave as ever, she’s no longer able to run. To honor her courage on the racecourse and support Taylor’s Tale, the non-profit organization I co-founded, I decided to run the Thunder Road Half Marathon blindfolded.

The race was scheduled for Nov. 16. On June 5 – National Running Day – I laced up my Brooks shoes and jogged to the home of Andrew Swistak, my friend and sighted guide for Thunder Road and a staff member at the school Taylor attended during that magical time with Girls on the Run. I experienced dizziness for my first few minutes as a blind runner, and I sprained my ankle when I got cocky and tried jumping a curb. But I didn’t fall, and by the end of the run, I knew we could cross the finish line on race day, just as Taylor did.

In total, Andrew and I trained together less than 20 times over a five-month span. I also cut down on my mileage in general, knowing that finishing the race and supporting the fight against Batten disease– not finishing with a great time – were our primary goals. Along the way, we managed to pick up extensive media coverage for our cause, including multiple TV stories, local print stories, online coverage and the cover story of a statewide magazine.

Finally, race day arrived. I headed uptown with Andrew and Dr. Steve Gray, the University of North Carolina gene therapy expert whose research Taylor’s Tale is co-funding; Steve would run the half marathon with us. My mom, president of Taylor’s Tale, and my husband, John, rode along; they’d run the 5K and help Taylor’s Tale have one of the largest teams at Charlotte’s largest road race, with 57 official members and a huge cheering station at the race’s final turn.

Just before the race began, I did one final TV interview and took a few pictures for another magazine. Then, we were off! We started with the early starters group, 30 minutes ahead of the official start, for safety reasons. The pace car forced us to run more slowly than we would have liked, so we lost time over the first two miles. After what felt like an eternity, he cut us loose, and we found our stride.

For most of the race, I ran “tethered” to Andrew by a two-foot bungee cord for safety. But at times, when he felt that it was safe to do so, he took the cord and allowed me to run untethered. At one point, we ran down the center of one of Charlotte’s most beautiful streets, a four-lane road covered by a canopy of huge, old trees and lined with stately homes. I ran untethered for what felt like ages, and during that stretch, I felt as if Taylor was with me, lighting my way.

Despite our slow start, the end came in less than two hours – almost too soon. As we approached the Taylor’s Tale cheering station at the race’s final turn, Andrew again took the bungee cord, and I made a 90-degree turn on his verbal direction alone. Close to 100 people clad in Taylor’s Tale purple and glitter, including 70 teenagers from a wonderful partner organization called Playing for Others, chanted my name as we ran past the station. And as we made for the last stretch and I reached for that last burst of energy, I knew I wanted to cross the finish line untethered.

There were no other runners around Andrew, Steve and me as we approached the finish line – something I didn’t learn until later, when I saw Steve’s photos. And during that last stretch, time stood still. When we got close to the timing mats, I picked up speed; I always sprint to the finish line in my races. And amidst the cheering, I heard Andrew yell, “Jump!” and then, “Jump!” for the second mat. And then, at 1:59:58, he pulled me to a stop, and I lifted the blindfold, and the soft light of the overcast day came pouring in, and I saw my mom and melted into her, both of us crying. I don’t know how long we stood there in that position, but when I opened my eyes, I realized we were engulfed by those 70 teenagers from our cheering station; they’d taken off after us when we made our final turn and surrounded us in the finish area. It looked like a scene from the end of a Disney movie, and I half expected them to carry us out of there.

Photo credit: Well-Run Media+Marketing, LLC

As the world and reality came rushing back to me, it hit me that the only thing missing from the finish line was my sister. Taylor – my reason for running – wasn’t well enough to come to the race. But even if she could have made it, she’s blind, so she wouldn’t have been able to see how we turned Charlotte into a sea of purple and love for her.

Team Taylor’s Tale helped make this year’s Thunder Road race a day that will have an incredible impact on the fight against Batten disease and other rare and genetic diseases, and it will forever live on in our hearts. We haven’t crossed the ultimate finish line yet, because we don’t have an answer for kids like my sister. But I believe we can write the happy ending to Taylor’s Tale, and I’ll never stop running – or fighting – until we do.

You can donate to help save kids like Taylor here. Taylor’s Tale is a 501(c)3 non-profit organization, and all gifts are 100 percent tax-deductible. Our website makes it easy to give and provides other ways you can get involved in the fight against rare and genetic diseases.

Stay in touch and spread the word by liking us on Facebook, following us on Twitter and Pinterest and following my blog. Learn more about Taylor’s Tale at http://www.taylorstale.org.

Questions:

Have you ever tried to close your eyes briefly while walking or running outside to experience the sounds and smells around you?

Do you have any questions about Taylor’s Tale or Batten disease?

Do you know anyone fighting a rare disease (rare diseases affect one in 10 Americans!)?