Crunch Time

By Laura Edwards

Endurance coverTwo short weeks from now, the finish line of the Thunder Road Half Marathon will be behind me. After five months of training and countless lessons about my sister’s dark world, it’s hard to believe that it’s almost here – and that once we cross the first timing mat, the journey of a lifetime will be complete in about two hours’ time.

We’ve gotten some great media coverage and have more on the way. If you live in N.C., pick up a copy of the November issue of Endurance Magazine. Taylor’s amazing story of courage on the race course made the cover! Click here for a note from the editor about the article. The South Charlotte Weekly ran a nice article a few weeks ago. The Charlotte Observer will print a story about our upcoming race tomorrow. We have more TV coverage on the way as well.

Wednesday night just before 10:30, Andrew and I embarked on a 4.11-mile run on the twisty streets of our neighborhood. Encumbered by the cul-de-sacs, speed bumps and rumble strips that have accompanied so many of our training runs, we checked in at a 9:43/mile pace. When my friend and guide dropped me off at my mailbox at the end of the run, I didn’t have a scratch on me and had two healthy ankles – both good signs. I haven’t fallen since my crash landing in mid-August – still my only accident throughout five months of training for Thunder Road. But as I read and reread the stats for our run, I knew I wanted to get FASTER.

10-mile run

This morning, Andrew and I headed to an office park area south of our neighborhood – the site of my longest blindfolded run to date – for just our second daytime run. I strapped on my new Camelbak water bladder pack; crowded water stations aren’t the place for a blindfolded runner, and the pack is a great solution for my hydration needs and all of the other random things I need for a long run (license, health insurance card, Shot BLOKS, etc.).

I wanted to run 10 miles today. The last time we went to the office park, we ran up and down one road that has light traffic on Saturday mornings, hills to train for Thunder Road (not known for being flat) and a chance to practice our turns. Andrew asked me if I thought I’d get bored running the same stretch for 10 miles, to which I responded, “It makes no difference to me!” After all, when you’re blind, the scenery’s all the same.

Running in a dark world as the fog lifted to reveal a bright, sunny day in Charlotte, I could have let my imagination take me wherever I wanted to go. But I stayed grounded, both for safety and to remember every moment of what may have been the last time I put on a blindfold before race day. I felt the sensation of cars as they passed, even though they moved to the center lane to give us room (we didn’t have any encounters like the first time we ran on that road, when a driver in a Porsche flew by and scared me so badly that I jumped into Andrew and almost knocked him over). I felt the “corrugated” texture of the bridge of the interstate beneath us and asked my guide to help me avoid the painted white lines on the road, because they felt slick.

Andrew 10-mile run

I also heard the voices of other walkers and runners. Andrew narrated their reactions to the crazy blindfolded girl wearing a purple backpack, most of which began as shock, then changed to slow recognition and finally a big grin and, sometimes, a thumbs up or a wave. We stopped to talk to two of the runners, one of whom teaches at The Fletcher School, the school Taylor attended for six years. I didn’t realize until later that without even thinking about it, I removed my blindfold long enough to say hello – which Taylor couldn’t have done. It felt like the polite thing to do, but when I pull that blindfold over my eyes, I really do want to blind myself – to experience my sister’s world and to remove all of the privileges that come with being sighted. I don’t intend to take off the blindfold at any point during the race. I’ve solved the water station issue, but more recently, I’ve thought about awkward things like restroom breaks, and whether or not I can skip them for 13.1 miles. I can hold it for 10. I think I’ll just force myself to hold it for 13.1.

Andrew and I reached our goal, after all. We logged 10 miles, my longest blindfolded run by far. We hit about an 8:45/mile pace, good for 1:27:42 even with a couple of stops for SHOT Bloks and the quick visit with Andrew’s friend from Fletcher. My PR for ANY 10-mile run is 1:20, set at the Tar Heel 10 Miler this April. So I feel great about what we accomplished this morning!

Taylor and Laura after the Jingle Jog 5K in 2008I’ll share a secret with you, too: for a brief period of time during today’s run, Andrew cut me loose. I ran down the center of the quiet street, the bungee cord that is my lifeline coiled up in my left hand, my guide just a few steps away. I picked up my speed, and I felt free as a bird. During those fleeting moments, I felt my sister’s presence. And I didn’t fall.

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. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!  Contact me with any Thunder Road-related questions.


Run to the Light

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

Mom's photos 232

The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded. 

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

running for Taylor


Miles to a Miracle!!!

By Laura Edwards

My sister, Taylor, is pretty amazing, and she has a lot of achievements to her credit – some of them mind-boggling considering the obstacles she faces.

When Girls on the Run came to Taylor’s school at the beginning of her fifth grade year, she insisted on taking part in the program with her classmates – never mind that she’s blind. Taylor has always refused to watch the figurative race – life itself – from the sidelines – and the way she saw it, a 5K should not be any different. Each weekday that year, she stayed after school to run and/or walk laps around the track with her classmates and coaches. Unlike the others, Taylor had a special buddy – an upper school student who held onto one end of a rope while T held onto the other end. With the help of this special friend, Mary-Kate, T never veered off course.
On the day of the practice 5K shortly before their first shot at the real thing – the Jingle Jog in uptown Charlotte – Taylor was the last person to finish her laps. I was not there that day, but many people have related their own version of the story of how, as T finished her last few laps, others – including her classmates and coaches – fell in behind her until finally, when T crossed the finish line, she was the leader of a huge pack. Molly Barker, founder of Girls on the Run, witnessed T’s feat that day and immortalized it in an article she wrote for Endurance Magazine.
A few days later, T took part in the 2008 Jingle Jog 5K in uptown Charlotte. Flanked by her running buddy, one of her coaches and a few classmates, she crossed the finish line running. The expression on my sister’s face at that very moment, in my eyes at least, was a symbol of hope: proof that nothing – even Batten disease – is cause enough for giving up on a dream.

Five months later, T completed the Girls on the Run 5K, shaving 12 minutes off her Jingle Jog time. On the last lap, we came across the word ‘Believe,’ written in big chalk letters stretched across the pavement. And even though T didn’t win the race that day, watching her cross the finish line a few minutes later really brought the magic of her story to light. It also reminded me that even though we don’t know exactly how long it will take us to get there, the finish line – in this case, the cure for Batten disease – does exist. And the smarter and faster we run, the more kids like Taylor we’ll save.

Enter Miles to a Miracle, Taylor’s Tale’s exciting new campaign to fight the disease that threatens to steal Taylor’s ability to run and so much else. T’s story is about running, but you can do whatever activity you love for kids with Batten disease – whether it’s running, walking, hiking, biking or swimming. Miles to a Miracle is a portal where you can log miles, raise money, connect with others and share your story through pictures, words and video. You can do something healthy and fun, network and support a great cause (happy endings for children like Taylor, of course!). You can create events of your own – from a top local race you run each year to a group walk after work one night. Our goal is to raise $24,901 – the distance in miles around the globe – in honor of kids all over the world fighting this tragic disease. For my part, I plan to donate a dollar for every mile I log in addition to asking friends and family for one-time donations when I run big races, like the Thunder Road Half Marathon in Charlotte next month. More than anything, though, we want Miles to a Miracle to take our story all over the world so that people know this horrible disease exists and takes the lives of all children it strikes. So, even if you don’t think you’ll do any fundraising but still want to help us use Taylor’s inspiring story to fight Batten disease while doing something healthy for yourself, please join us!

Register today to start logging miles, or donate to a friend’s effort. Either way, you can help write the happy ending for children fighting Batten disease! Thank you for all that you do to protect those seven chalk letters we saw on the street that day. The chalk washed away long ago, but the letters themselves live on in my heart:

B-e-l-i-e-v-e.

Go to Miles to a Miracle!