Running Toward Everything

By Laura King Edwards

I’m traveling for races so much these days, it isn’t often that I have a chance to run in my North Carolina hometown. So I looked forward to running in today’s Charlotte 10 Miler, where I figured to see familiar faces and log a fast time on a familiar course.

But life happened, as it tends to do. I lost my father-in-law on Election Day and moved into a new house on New Year’s Eve. I dove into Taylor’s Tale with a sort of conviction I struggled to muster in the past several years. I stayed busy at the office. Needless to say, my feet haven’t seen much action on these fleeting winter days.

But I had a lot of things to fuel me along the 10-mile course on sleepy neighborhood streets and wooden walkways and tree-lined trails winding through urban wetlands. The Batten disease community lost six children in the past few weeks. My own sister’s stubborn star is fading. And as the morning sun lit up the sky in shades of coral and salmon and goldenrod, I inked not one, but two names, on my arm.

Charlotte sunrise

The first was Taylor’s. I’ve been running races for a purpose since I took my first steps at Chapel Hill’s Tar Heel 10 Miler on a spring day in 2009, four months after my blind sister crossed the finish line of her first 5K with her face turned toward heaven.

Charlotte 10 Miler for Taylor

The second was Bridget’s. Twelve-year-old Bridget Kennicott gained her angel wings on February 15 after a brave battle against late infantile Batten disease. I’ll never forget the first time I met Bridget and her family at a Batten Disease Support and Research Association conference in Chicago. Bridget’s dad, Dave, sat behind me at a research session in one of the hotel’s chilly conference rooms. Bridget looked like a sleeping angel in the stroller beside him. When I twisted in my chair to say hello, she took hold of my finger and didn’t let go.

Something my sister used to do.


Charlotte 10 Miler for Bridget

A lot happened in the months leading up to the Charlotte 10 Miler. But in this, my first race of 2017, I didn’t think much about the past. Instead, as I weaved through colorful flashes of wicking shirts and race bibs and compression socks on the course this morning, I mostly thought about what I was running toward. 

7:51/mile splits. The finish line. The 35-39 age group (my birthday is in 10 days). My next race, in state 16 of 50. Exciting next steps as an author. A trip to D.C. for rare disease meetings on Capitol Hill. A gene therapy clinical trial for children with Batten disease. My sister’s tempered laugh. An evanescent smile. A radiant soul. One brilliant future realized; another extinguished.

Running toward everything.

Running for Taylor: 2015 in Pictures

By Laura King Edwards

When I set out to run a race in all 50 states to honor my sister and support one in 10 Americans suffering from a rare disease, I only wanted to build on the momentum of running 13.1 miles blindfolded, which I did at Charlotte’s Thunder Road Half Marathon in late 2013. Taylor’s story was too good, her courage too inspiring, and the success of the blind run too complete to call it quits.

I never imagined the ride would be quite like this.

As the year comes to a close, I’m taking a look back at an incredible 2015: nine races, seven states and enough memories to last a lifetime. continue reading →

Running for Taylor: From the Other Side

By Laura Edwards

On a cool morning in Chapel Hill, North Carolina last April, I arrived on the UNC campus for my fifth straight Tar Heel 10 Miler. I was the healthiest and fittest I’d ever been, and I was coming off a 1:17 PR for the 10-mile distance. I didn’t match my PR that day, but Team Taylor’s Tale ran well for the fight against Batten disease.

Sometimes it seems as if I’m always hurt, but I’ve never missed a race due to injury. Until today. continue reading →

Confessions from Laurel Hill

By Laura Edwards

Tar Heel 10 Miler pre-raceToday, I joined 6,200 other runners for the seventh annual Tar Heel 10 Miler in Chapel Hill.

John and I jogged from the Carolina Inn to the bell tower on the campus of my alma mater, the University of North Carolina (UNC); we met Steve Gray, our friend and a UNC gene therapy expert whose work makes me believe, just as the morning light touched the towering pines and the dew-kissed pink and white azaleas.

I’ve battled various injuries since early March, including a mysterious ankle problem for the past week, that have limited my training; I ran just 25 miles in April prior to today’s race, less than an average week for me in 2013. I didn’t know what to expect from this race, my fifth consecutive entry in the Tar Heel 10 Miler. Butterflies wrecked my insides as we waited to begin. But no matter what, I start every race with the intent to run faster than I’ve ever run before. One month ago, I ran the Charlotte 10 Miler in 1:17:49, a 7:46/mile pace. So after Steve and I saw John off for the four-mile run, I wished Steve good luck and found my way to the 7:30/mile pace group.

I got off to a quick start and stayed with my pace group for most of the race. But around mile six, I began to feel winded. I wondered whether I’d started too quickly.

As I hit a long downhill stretch close to mile seven and eased up to save my quads, I thought about my family at home in Charlotte. My parents and Taylor started the 150-mile trek to Chapel Hill on Friday evening, because they wanted to be there for me today. But when you’re fighting Batten disease, a lot can happen in 150 miles.

My family never made it to Chapel Hill last night; Taylor got sick around Greensboro, and they had to turn around and go home.

I hate Batten disease.

I know the Tar Heel 10 Miler course almost as well as my own neighborhood, but Laurel Hill always sneaks up on me. Laurel Hill, the 200-foot vertical gain that spans just under one mile near the end of the race, is a personal record (PR) killer. A lot of people walk it. Though I’ve come close to speed-walking the tough stretch, I always find a way to power through the hill (actually a series of consecutive hills). Last year, I ran Laurel Hill in 7:18.

But as I began the first steep climb, I felt a deep burn in my legs and my chest. I fought through the urge to slow to a crawl.

When I crested the first hill, I came upon a small crowd of supporters clustered at the top. Keep going, they said; keep pushing; you’re almost done. In the middle stood a woman clutching a poster that read, “Don’t stop believing.”

At that moment, it hit me: I’m going to lose my little sister, no matter how fast I run.

I’ll never know what quit on me – my legs or my heart. But there, under a canopy of trees and the bright, blue sky beyond, I walked for the first time ever in a race. And as I took long, deliberate strides toward the finish line, I cried behind my sunglasses.

I didn’t run my best race today, but I finished. The ghost of Laurel Hill behind me, I recovered to run the last mile in 7:18 with wet eyes. I floated through the stadium tunnel before sprinting onto the track for the final stretch, pummeling Batten disease every time my shoes pounded the rubber.

Though she proved too ill to travel to Chapel Hill, I felt my sister’s presence when I crossed that finish line at 1:24:11.

And I still believed.

On Boston and Believing

By Laura Edwards

Yesterday, a nation watched as an American man won the Boston Marathon for the first time since 1983 and an American woman held the lead for 17 miles, finishing seventh. I stood 10 feet from the male winner, Meb Keflezighi, when he served as the official starter for the Tar Heel 10 Miler in Chapel Hill. I was a classmate of the top American female, Shalane Flanagan, as an undergrad at the University of North Carolina.

Meb’s race ended in joy, while Shalane’s ended in heartbreak; in the end, her very best wasn’t quite fast enough to win.

But as I reflected on these runners’ experiences and the bigger picture of yesterday’s race, the 118th edition of the world’s most prestigious marathon, I thought about how the sport of running embodies so much more than getting from one place to the next or attempting to cross the finish line first.

In Boston, it’s a symbol of the ties that bind a city and a nation in the face of a terrible crime, an unspeakable tragedy.

For me, it’s an enduring symbol of my sister’s great courage, even though it’s been nearly five years since she completed her last 5K and she can no longer walk without assistance.

For anyone who has ever run or dared to dream, it’s a symbol of what it means to believe.

Being the Best You Can Be

By Laura Edwards

Saturday morning marked my second race of the year for Taylor, the Charlotte RaceFest 10K. A well-organized race around the corner from my house, it serves as a great warm-up for Chapel Hill’s Tar Heel 10 Miler.

Normally a stickler for race preparation, I’ve been breaking lots of rules lately.

Eight days prior to RaceFest, I ventured out to a local CrossFit gym with a group of coworkers over lunch. A CrossFit rookie, I went a little nuts with my squats and paid for it with sore glutes, hamstrings and quads for five days. I learned that just because I can run a five-minute mile doesn’t mean I’m too good for the beginner’s kettle bell.

The day before the race, I felt a deep, sharp pain in my lower right leg. It hurt so much that I couldn’t walk my dog, but I’ve never pulled out of a race. I slathered the area with Biofreeze gel and popped a couple of ibuprofen pills.

That night, I laid out all of my clothes and race odds and ends, from my race bib and safety pins to Yurbuds wireless ear buds. I met my foam roller for a post-dinner date and iced my calf. I fell into bed a few minutes before midnight.

On Saturday morning, I pulled on my Taylor’s Tale shirt and 4Taylor compression arm sleeve. In the name of injury management, I made a fashion statement with my compression shorts and calf sleeves. I toasted a bagel, but I felt too nervous to eat. As stubborn as I am, I knew in my heart that I probably shouldn’t run.

I didn’t have time to warm up before the race, but I managed a 7:16 pace over the first mile, likely on adrenaline alone. I knew I couldn’t maintain that pace injured, but I tried to listen to my body and remember my reason for running.

With less than two miles to go, I approached a girl I recognized from one of the Charlotte soccer leagues I frequented before injuries ended my career. She may be a nice person, but on the field, she played dirty. I hate to admit this, but part of me focused on beating her, and I drafted her for the remainder of the race.

20140414-181734.jpgAs I approached the last stretch and the finish line came into view, I knew I didn’t have a shot at a personal record (PR). I always sprint the final stretch. But when I reached down into that deep, passion-fueled place where I usually find my last burst of speed, I realized I didn’t have anything left. I talked myself through the last 100 yards, and I chugged across the finish line at 48:53, a 7:52/mile pace – 59 seconds slower than my 2013 time but still good for 10th place in my age group (and five seconds ahead of my “drafting buddy”).

Perhaps if I’d pulled out of the race altogether or finished a good 10 minutes off my PR, the result would have been easier to swallow. It took me a few minutes of walking around, breathing in the fresh air and feeling the warm, spring sunshine on my skin to remember that I ran a great race for a chick on one good leg and, more importantly, why I ran the race in the first place.

That’s the great irony of “racing” for my sister and hero, Taylor: she finished two 5Ks but never entered an athletic competition to “win.”

So as I finally came to terms with my time and kicked back at a table across the way to break my hunger, with a finisher’s medal around my neck and my heart on my sleeve, I remembered one of the many great lessons my little sister has taught me in her short time on this earth.

It’s not always about finishing first.

Sometimes, it’s about being the best you can be, every day.

How to Fly

By Laura Edwards

I’ve been an athlete for 20-plus years and still have blue ribbons won for the 50-yard dash at my elementary school’s field day (my house may look spotless at first glance, but behind the closet doors, I’m really a packrat). But I didn’t enter my first road race until the year I turned 24, a few months after Taylor’s Batten disease diagnosis.

As has been my track record of late, I did (almost) everything wrong leading up to this morning’s Charlotte 10 Miler. I strained my calf on a long run on the first Sunday in March, and the injury put me out of commission for almost two weeks. I eased back into running (the only thing I did right), and my longest run leading up to the race was a whopping three miles at a 10:00/mile pace. I got a nasty head cold this week and popped Mucinex D like candy all weekend. I went to bed after 1 a.m. the night before the race and grabbed a solid four hours of sleep before my alarm sounded this morning.

But when I got to the race parking lot, I felt good. The weather couldn’t have been better. The forecast called for rain by mid-morning, but at that early hour, the sky was streaked with fire as the sun stretched and yawned low in the sky. I followed my friend Andrew’s advice to take a few warmup laps in an attempt to break my string of slow starts.

I shot out of the starting area, and for the first mile, I kept up with the race leaders. I felt bad when Théoden Janes, the Charlotte Observer’s pop culture reporter who also writes about running and has a popular Facebook page called Run with Théoden, passed me, but then I reminded myself that he qualified for Boston and has a personal running coach. I kept a steady pace; after three miles, I realized I’d just broken my PR for the 5K distance – and I still had a lot of gas left in the tank.

Andrew, who guided me to the finish line when I ran Charlotte’s Thunder Road Half Marathon blindfolded for Taylor in November, was waiting with a cup of water and a dose of encouragement at the mile four water stop. I coasted through and kept going, my pace still holding steady.

It wasn’t until mile eight that I lost time. I entered a neighborhood with two consecutive hills that, today at least, made the Tar Heel 10 Miler’s famous Laurel Hill feel like a molehill. My legs and my lungs burned. As I rounded the first corner and came to the second hill, I said aloud, “You. Will. Not. Walk.” I envisioned my sister, at home, fighting with every bone in her body. And I didn’t walk.

Charlotte 10 Miler finish

Andrew found me on the last mile. He reminded me how close I was to breaking my PR, but I already knew. I smiled at my friend and guide, and I kept running.

That’s when my little sister jogged up beside me on legs that, once upon a time, ran two 5Ks. She turned to me and said, in a voice lost to Batten disease, “You remember how to fly.”

Less than half a mile later, I sprinted into the final stretch and across the finish line for my best-ever 10-miler time by two full minutes: 1:17:49 (7:46/mile pace), good for 60th overall and second in my age group. Robbed of my regular aerobic capacity by all of the junk in my system from the head cold, I gasped for air as I bent to my knees just past the finish line. My husband and my dad, there to watch me finish, asked if I was okay.

“I’m okay,” I said. “I’ve just never run that fast before.”

As I limped out of the finish area with my first race medal of 2014 around my neck, I thought for a second, maybe that’s as fast as I can go.

end of Charlotte 10 Miler

But I know it’s not. And I know that when I lace up my shoes for the next race in less than a month, I’ll try to beat myself again.

Some days, when our fight against Batten disease gets really tough, I think that maybe we’ll get to a point where we’ve done all we can do.

But deep in my soul, I know that point doesn’t exist.

Because regardless of how our story ends, there will ALWAYS be another Taylor. There will always be another family like ours. So no matter how many hills I have to climb, no matter how much my muscles ache and my lungs burn, and even if I have to finish this race alone, I’ll be damned if I’m going to come this far only to stop short of the finish line.

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.

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.