The Ghost of Laurel Hill

By Laura Edwards

photo (7)Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which¬†Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

end of tar heel 2013 I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.


Running for Taylor on 11-17-12

By Laura Edwards

For as long as I can remember, I’ve run to deal with pain.

Since Taylor’s infantile Batten disease diagnosis in July 2006, I’ve run a lot – on average, more than 1,000 miles a year. Running doesn’t give me solace – not exactly, anyway – and besides, my feet can’t carry my sister to survival. But it’s a lot cheaper than counseling and massage therapy and once-in-a-lifetime trips to faraway wonderlands – all of which have also contributed their fair share to my survival over the years. And running clears my head. It helps me feel alive. It makes me appreciate my (mostly) healthy body – for instance, two eyes to drink in the amber, gold and crimson leaves and powder blue sky that framed last weekend’s run and two legs to carry me over a never-ending course that goes wherever I tell it to go and stops only when I want to rest.

I played soccer all my life, and I always had running in my bones, but I didn’t run in my first organized distance race until five years ago. Around that same time, my sister, Taylor, signed up for Girls on the Run at her school. Blind and less than a year removed from major brain surgery, Taylor nonetheless went to practice with the other girls and walked or ran her laps every day after school. Near the end of the semester, a crowd of kids joined in as she finished the final laps of her practice 5K. And that December, Taylor and her running buddy, joined by a simple jump rope, ran the entire length of the Jingle Jog 5K in uptown Charlotte without stopping even once to rest. Five months later, they did it again in the Girls on the Run 5K.

ourboys race

Since watching my little sister cross the finish lines of those races nearly four years ago, I’ve run every last mile for her.

On Saturday, Nov. 17, I’ll run in Charlotte’s Thunder Road Half Marathon for the fourth time. Last year, I had surgery the morning before the race and couldn’t run. I’ve had a light year so far in 2012 – the Charlotte 10 Miler and Frostbite 10K in February and the Tar Heel 10 Miler and ourboys 10K in April. So I’m hoping to finish with a bang at Thunder Road.

Thunder Road is Charlotte’s biggest race of the year, so if you’re a runner and live in the area, chances are, you’re signed up too! If so, and if you’re interested in running in Taylor’s honor/for Taylor’s Tale, please let me know ASAP. If you’re not running but want to come out that morning and cheer on the runners, simply click on the link above to access a course map – then be on the lookout for the girl decked out in Taylor’s Tale purple. ūüôā And – if you’re so inclined – you can make a tax-deductible donation to our Miles to a Miracle campaign in Taylor’s honor by clicking here. All proceeds support the search for a therapeutic treatment for Batten disease.

We’ve made a ton of progress in the race to save children like Taylor. Thanks for helping us get to the ultimate finish line!


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!


Chalk Letters

By Laura Edwards

This morning, flanked by two angels, Taylor completed the Girls on the Run 5K 12 minutes faster than she reached the finish line of the Jingle Jog 5K in December. 
On the last lap around picturesque Latta Park, we came across the word “Believe” written in big chalk letters that stretched across the pavement. Believe – that’s the gift T gives us each and every day.
“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” –-Hubert Humphrey


The T Zone

By Laura Edwards

This Saturday, Taylor will run in her second 5K when she joins her Girls on the Run teammates at Charlotte’s Latta Park for the culmination of their spring program.

The expression on T’s face as she crossed the finish line of the Jingle Jog 5K this past December with her running buddy, Mary-Kate, is still fresh in my memory. The bungee cord that connected them was T’s lifeline that day. For me, it symbolized hope: proof that nothing – even a disability like T’s – is cause enough for giving up on a dream.
T has a lot of fans, and while I know you’ll all be there in spirit on Saturday, she needs some of you there in person. The Packers have the Cheeseheads. Duke has the Cameron Crazies. Michigan State has the Izzone. If you’re in Charlotte this weekend, please consider coming out to Latta Park and forming a cheering section for T – call it the T-Zone. Then, watch her finish the race. When she crosses that line, you’ll understand the magic that is her story. And it’s not just her story, not really. Rather, it’s the story of any girl who’s ever overcome an obstacle, discovered her own gifts and embraced them.
The race starts at 9 a.m. on Saturday at Latta Park in the Dilworth neighborhood. Click here for details.
Go, T, go!