Laura King Edwards

Laura King Edwards runs the 2013 Thunder Road Half Marathon blindfolded to raise awareness for Batten disease.  

Laura King Edwards’ younger sister Taylor King was diagnosed with Batten disease when she was 7 years old. At the time, Taylor could sing and dance, she made good grades in school and adored Disney princesses and the color pink.

Now 17 years old, she is blind and in a wheelchair, and cannot eat without a feeding tube and suffers from frequent seizures.

Before her condition worsened, King ran 5Ks and other races, a hobby that her big sister picked up as well.

After competing became impossible for King, Edwards still wanted to run for her sister, and still wanted to accomplish something big. Since then, Edwards has taken on the challenge of running a marathon in all 50 states.

When she runs the Athens Half Marathon on Oct. 25, the race will be the ninth of her daunting campaign to spread awareness for Batten disease.

“I think this whole thing has already been an incredible tool to share [King's] story,” Edwards said. “Everywhere I go, the support I get from these communities has been incredible.”

Edwards' cross-country mission raises money for Taylor’s Tale, a nonprofit organization started by her family that advocates for research and treatment of rare diseases such as Batten disease.

Batten disease is a fatal neurodegenerative disease most commonly found in young children. It attacks an initially healthy child, causing vision loss, loss of cognitive skills and seizures. Over time, patients become mentally and physically incapacitated until they are bedridden, for which there is no known cure. 

Nicole McEwen, a sophomore University of Georgia student from Charlotte, North Carolina, first became involved with Taylor’s Tale during her senior year of high school, after she met Taylor through the organization Playing for Others. Taylor, who was 15 at the time, quickly won McEwen over.

“I remember the first time I saw her smile, we were playing music and dancing around,” McEwen said. “[King] just started laughing and bouncing around in her wheelchair, and we were so happy. I realized that she’s just like every other kid.”

During King's fifth grade year, Girls on the Run, a nonprofit organization geared toward motivating girls through athletic activities, came to her school. King signed up to run the 2008 Thunder Road Half Marathon in Charlotte without so much as a second thought.

“You’d think that a girl suffering from such a terrible disease ― a girl who is totally blind ― she’s not going to train with her friends to run a 5K race,” Edwards said. “But that’s not my sister. [She] never stops trying.”

Edwards said her sister’s determination is contagious.

“Watching her cross the finish line of that first race was one of the most inspiring things I’ve ever witnessed,” Edwards said. “I’ve been running for her ever since.”

For the fifth anniversary of King's first 5K, Edwards decided to do something more. She wanted to experience the Thunder Road Half as her sister had― totally blind.

She trained for five months blindfolded, with King's track coach as her pair of eyes and a tether between them to keep her safe. Edwards said taking her eyes out of the equation was extremely nerve wracking.

“You know that feeling you get on the first dip of a really big roller coaster? That’s kind of how it felt the first time I ran blind,” she said.

In a way, Edwards believes the blindfolded race brought her even closer to her sister.

“It’s definitely something I’ll never forget,” she said. “In a beautiful way, I learned what kind of experience my sister is having, at least to a small extent. The only difference is that when I finished a race, I was able to take my blindfold off. It breaks my heart that she’s not able to do that.”

Mcewen was among the crowd of purple-clad Taylor's Tale supporters cheering Edwards on as she crossed the finish line.

“It was the coolest thing to see [Edwards] come around that corner and let go of her tether as she crossed the finish line,” Mcewen said. “I remember how Laura just ran into her mom’s arms, and we all started crying. It was a beautiful moment.”

After the 2013 Thunder Road Half Marathon, Edwards and Taylor’s Tale received press coverage. Soon after, Edwards decided to do even more, setting off to complete her goal of racing in all 50 states. Just before heading to Athens, she completed the Kauai Half in Kauai, Hawaii.

While Edwards said she hasn’t planned anything after the AthHalf, she said she wants to complete the Disney Princess Half Marathon in Florida someday. She plans on dressing up as Sleeping Beauty― King's favorite princess.

For more information about King's story and Batten disease, visit the Taylor’s Tale website or Edwards’ blog.

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