The Reason

By Laura Edwards

The Thunder Road Half Marathon is less than a week from today. When I closed my eyes and took my first steps as a blind runner on a middle school track on June 5, I only hoped that I would cross the finish line standing on Nov. 16. But now, with 15 blind runs under my belt, including a 10-mile run just seven minutes shy of my sighted personal record for that distance, I feel confident that Andrew and I will run a great race for Taylor and the millions of people fighting a rare disease.

With Thunder Road just days away, my attention has shifted away from training for the race to considering last-minute logistics, such as:

  • We have more than 40 people running for Taylor’s Tale, giving us one of the largest teams at Charlotte’s largest road race; somehow, we have to get purple Nike Dri-FIT shirts to our runners between Tuesday (when they come back from the printer) and Friday.
  • We’ve received local, statewide and even national media interest in our story; juggling interviews, especially for TV, with a full-time job can be like trying to put together a jigsaw puzzle with a couple of missing pieces.
  • The race begins and ends in uptown Charlotte; this morning, I squinted over my cup of decaf coffee at the parking map posted on the race website and tried to find the corner near the finish line where our cheer station will be located.

As much as I want our supporters to have convenient parking, I’m most concerned about my dad, who will be with Taylor on the morning of the race.  I’ve often dreamed about what I will do when Andrew and I cross that finish line. I can’t even begin to imagine how I will feel.

I called my first post about this race “Run to the Light.” After 13.1 miles in the dark on Saturday, I’ll take off my blindfold; I hope my little sister is the first person I see. But last night, for the first time, I grew concerned about finding parking close enough to the finish line that my sister can make it there.

In the five months since Andrew and I began training for Thunder Road, Taylor has slipped deeper into the dark chasm of Batten disease. She struggles to walk, even with a walker. She suffers from myoclonic jerks. Batten disease has silenced a once beautiful singing voice. I don’t remember the last time my sister talked to me. I wish I’d known it was the last time. I would have savored it, or recorded it, or made a note of the date.

Taylor's 5K finishFive years ago, my sister ran her own triumphant race at Thunder Road. She ran tethered by a bungee cord to a sighted guide, just as I will do on Nov. 16. She stumbled and fell a few times, but she pulled herself to her feet, brushed herself off and said she could keep going. And she RAN across that finish line.

But that was five years ago. I know a lot about Batten disease. I may have majored in English, but I can describe the science of Batten disease in cold, technical terms. And I know this to be true:

My sister is dying.

I talked with a writer at a national magazine for a possible story yesterday morning. She asked me if I believe that this run, or the efforts of Taylor’s Tale, can save my sister.

I believe in Dr. Steve Gray, who will run alongside Andrew and me on Saturday. I believe that Steve and the team at the UNC Gene Therapy Center can save the lives of kids like Taylor. But as much as I believe in Steve and a handful of other talented scientists around the world working on Batten disease, I don’t know the answer to that writer’s question.

horseback riding

I do know this, though:

There will ALWAYS be another Taylor if we do nothing. Children and families shouldn’t have to endure a tragic disease with no known cure. And I believe we WILL beat Batten disease.

For me, Taylor’s courage as a runner will always live on as a symbol of her never-give-up attitude in her fight against Batten disease. Blindness kicked her and knocked her down when she ran that 5K at Thunder Road in 2008, but she pulled herself up and kept going. I won’t give up in MY fight on behalf of people like her until the day we cross the ultimate finish line.

Taylor didn’t stop running until her body gave out on her…and neither will I.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K by TONIGHT at 11:59 p.m. ET. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” If you miss this online registration deadline, you can also register at the race expo on Friday, Nov. 15. Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, click here for details about the official Taylor’s Tale cheer station on the course!  Contact me with any Thunder Road-related questions.

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4 Comments On “The Reason

  1. Linda Crain Reply

    Laura,
    I have followed your blog,… I feel your courage and your drive to beat Batten Disease. I look at my son every day, he’s 5 years old, and was diagnosed less than a year ago with this dreaded disease. We would do anything to beat this if it meant running to the end of the earth. We learned as of late this past week that it has taken his vision already. This was the hardest thing for me to accept as a mother. When your child loses their ability to talk, walk, and eat within a few months , you wonder what next. You become their voice and their eyes, as you have done for your sister, Taylor. I commend you and have the utmost respect for you. My husband and I will be there to run with you, cheer you on, and raise awareness for Batten Disease. .God has the wheel and will lead the way.- Linda Crain, mom of Kane Degeorgis , 5yrs old diagnosed with LINCL.

    1. Member Laura King Edwards Reply

      Linda,
      I understand what you’re going through. I hate this disease and won’t stop fighting until we have answers for kids like Taylor and Kane. As much as I appreciate your kind words, they’re the true heroes. My sister’s courage helps me climb the toughest hills in a race and fuels my own fire in the fight against Batten disease. I’m honored that you and your husband will run with us and can’t wait to meet you!
      Laura

  2. Debbie @ Deb Runs Reply

    I’ve been following you for several months, and I can’t believe your half is almost here! I will be thinking of you and praying that you’re able to get Taylor to the finish line to cheer you across the finish line.

    1. Member Laura King Edwards Reply

      Thanks so much for your continued interest in and support for this run and our fight against rare diseases, Debbie. I also hope we can get Taylor to the finish line on race day. I’m saving a big hug for her!

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