Never Forget

By Laura Edwards

On the morning of Sept. 11, 2001, I sat in a poetry writing class at the University of North Carolina as fiery, unspeakable events unfolded in New York City, Arlington, VA and rural Pennsylvania. None of us had smart phones in those days, so when our teacher dismissed us, I walked outside and headed for my next class just as I would have done on any normal Tuesday. At the time, I didn’t notice the deserted quad, normally bustling with students at that time of morning.

When I climbed the steps of the journalism school and walked inside, I found what appeared to be the entire student body, crammed into the building lobby but yet strangely silent. They all stood frozen, their eyes transfixed on the journalism school’s large projector TV screen, where two commercial jets crashed into the twin towers of the World Trade Center, again…and again…and again.

I remember when our professor’s voice broke the silence to announce that class was cancelled. But I don’t remember the rest of those kids clearing out of the building. At some point, I did float out of that lobby alone, away from those terrible images and onto the steps of the journalism school, where I found the quad deserted for the second time in one day. My body, guided by some power other than my own, eased down into a sitting position, at which point my 19-year-old lungs breathed in the crisp, clean air of a late summer day on an American college campus, and my innocent eyes drank in the image of an unmarred blue sky dotted only by the soaring, leafy green treetops that watched over bright minds and moonlit strolls and games of Frisbee.

In those moments, on that impossibly beautiful day, I realized our world would never again be the same.

On the morning of July 24, 2006, I sat at my desk at a hospital in Charlotte, NC – eight months into my new job and one month into my marriage to my high school sweetheart. It was a hot but beautiful day, and everything, so far at least, had fallen into place for me. My world overflowed with happiness and possibility.

When my phone rang a few minutes after 10 a.m. – about the same time I learned of the 9/11 attacks – I heard the phrase “neuronal ceroid lipofuscinosis” for the first time – and my world changed forever.

My parents live eight miles from the hospital. I climbed behind the wheel of my car shortly after taking that call, but I don’t remember a single moment of the drive. Somehow, a force from some deep, unknown place guided me home, where I was most needed.

I do, however, remember every single moment from the rest of that fateful day.

The tear-soaked embrace in the floor of my parents’ bedroom.

Seeing my little sister – and feeling alternately overjoyed and crushed knowing she was completely unaware of the deadly disease within her – when we picked her up for her therapy appointment.

Building matching teddy bears with Taylor at the Build-a-Bear Workshop, making a wish for her life, stuffing it deep into the bear before sewing it up tightly…and not feeling silly at all.

It’s amazing how, in a matter of seconds, our lives can transform from being buoyed by hope and joy to being warped by pain and the pure cruelty of fate. It’s amazing how quickly our concept of what’s most important can change.

Today and every day, I remember those who lost their lives on 9/11 and those whose lives have been impacted by the tragedy. I am grateful for all those who make it possible for us to feel safe. And though the news clippings may fade, the memorial crowds may shrink and the stories may become more few and far between, I will never forget.

Today and every day, I fight my own battle for my little sister, in hopes that one day, the worlds of children like her and families like mine will not be shattered in a single moment. And though my body may grow tired and – yes – I may lose her – I will NEVER FORGET.


By Laura Edwards

On Saturday, I ran the Tar Heel 10 Miler in Taylor’s honor for the third consecutive year.

I awoke to the sound of my iPhone alarm and my friend’s guest room clock playing a heinous duet – I’ve never been able to bring myself to trust a single alarm to do the job pre-dawn – before 5 a.m. I dressed by the light of a single lamp and inked my sister’s name in block letters on my left arm with a purple marker, packed for the occasion. I ate my traditional pre-race breakfast – a bagel with cream cheese and a fruit smoothie – in the dark, silent kitchen. I swung my Explorer’s headlights out onto Orange County’s rural roads before 6 and drove about 30 minutes from my friend’s home in Hillsborough, NC to a parking lot tucked beneath the watchful gaze of the Dean Smith Center and the Kenan-Flagler Business School on the campus of my alma mater, the University of North Carolina. I checked and re-checked my pack for my license, credit cards, health insurance card (it’s never a stretch to assume I’ll get injured), car keys and sport jelly beans. Satisfied, I began the 10-minute walk to Kenan Stadium to join 2,734 other runners for the 7:30 a.m. start, led by 2012 U.S. Marathon Olympic Trials champion Meb Keflezighi.

When the gun sounded, I inched my way around the stadium track amidst the crush of bodies. As soon as I reached the tunnel leading out of the stadium, I took off.

Around mile three, I got awful cramps (I never get cramps after three miles). The course seemed hillier than usual. I wondered if the other runners nearby could hear my breathing. But I kept going.

Over the first five miles, I recorded a 7:50/mile pace. I knew that if I kept it up, I’d smash my personal record (PR) for 10 miles – 1:25:27, recorded in the 2011 Tar Heel 10 Miler – and my previous 10-mile race time – 1:26:10, recorded in the Charlotte 10 Miler in February of this year. And oddly – though physiologically I’m better suited to sprinting – I tend to finish distance races much more strongly than I start them.

Around mile seven, things got a little uglier. My bum ankle (sprained about six weeks earlier and never fully healed) complained. My hamstrings and quads screamed. My lungs burned. I cursed myself for not getting more sleep (I didn’t turn out the lights till after 1 a.m.). And the notorious Laurel Hill – a 0.8 mile climb near the very end of the course that is so punishing, it gets its own separate timing mats at the bottom and top (because scaling Laurel Hill quickly warrants serious bragging rights) – still loomed.

When the first Laurel Hill timing mat came into my field of view, I think I audibly groaned. I wanted to walk. Normally I can run 10 miles (and farther) non-stop without any issues, but I’d really pushed myself for the first eight-odd miles of the race, and I could feel the effects.

At that very moment, I glanced down at my feet; as my eyes traveled downward, I happened to see the message inked on my arm: “4 TAYLOR.”

I churned my legs and arms up that hill. I ran it a good bit more slowly than last year, but I MADE IT. And soon enough, mile marker nine came into view. The end was near! I experienced a wave of emotion at that moment – relief that my exhausted body would soon have water and a cool metal stadium bench, and disappointment that my favorite race in the whole world – and the high I get from running for a cause in which I so deeply believe and for a little girl I love so much, would soon come to an end.

I ran the final mile in 6:28 – my fastest of the entire race.

When I approached Kenan Stadium, I slowed long enough to stuff my sport beans safely into my pack and remove my hat so I wouldn’t lose either during my customary dash to the finish line. As I burst through the tunnel and into the sunlight that soaked the stadium, I broke into a full-on sprint. All of the pain in my muscles was gone, and I was no longer tired. At that very moment, I felt as though I could run another 100 miles.

One hour, 25 minutes and 34 seconds after crossing the start line, I crossed the finish line. I missed my PR by a mere seven seconds – amazing considering the length of the race. I briefly regretted the precious wasted seconds outside the tunnel just before the end of the race, when I slowed to take off my hat and put my sport beans back in my pack.

And then, just as quickly, I dismissed the thought.

I finished 722nd out of 2,735 overall (men and women), putting me in the top 26 percent of the field. Yes – I came agonizingly close to setting a new PR – but I had a fantastic time missing it, raised awareness of Batten disease and honored my little sister, who once told me she dreamed of walking that campus as a student someday.

God built me like a sprinter, but the fight against Batten disease is a long and difficult race. Outside of my finish line dashes, I’ll never stand out in a distance race field, but if my times show anything at all, they show I’m consistent. And I’ll never, ever stop fighting this fight. I’m in it for the long haul, no matter how many Laurel Hills we face.

To honor Taylor and support the fight against Batten disease, I’ll make a donation to Taylor’s Tale’s Miles to a Miracle campaign. Please consider making a gift, too! Click here to visit my page; scroll to the ‘Support My Cause’ section at the bottom to donate. Thank you for your support!

Tar Heel 10 Miler 2012 stadium finish

2012 Tar Heel 10 Miler

By Laura Edwards

In two weeks, I’ll run for Taylor in my favorite race of the year, the Tar Heel 10 Miler. The course meanders through the streets of Chapel Hill, NC, and the campus of the University of North Carolina, my alma mater.

I graduated from college nearly eight years ago. Often, I feel as though the time I spent in Chapel Hill happened in another life. So much has transpired since then. And yet, some moments seem frozen in time.

I felt particularly homesick one day during the fall of my freshman year when I received a message from my mom’s email account. “Dear Rar Rar,” it read. “I wanted to send you a message, too. Here goes!” (insert several lines of  unintelligible gibberish here) “Love, T.” 

I printed that email and posted it on the cork board that hung on the wall over my desk in my dorm room. Every time I moved throughout my college career, the cork board came down and went into a cardboard box and onto the next temporary dwelling. The piece of paper with T’s email survived all of the moves, including the final journey home to Charlotte after graduation. I still have it today.

I used to imagine that my little sister might someday follow me to Chapel Hill – or wherever her dreams led her. Now, I hope that Batten disease does not steal her from us before she reaches the age when kids typically head to college, their entire lives still ahead of them.

Last year, I ran the Tar Heel 10 Miler in 1:25:27 – my personal best for a 10-mile race (I came close to matching it in the Charlotte 10 Miler in February with a time of 1:26:10). I’ve been hobbled by a sprained ankle for the past month, but I still hope to post a strong result on the 21st.

Once again, I’m running in honor of Taylor’s valiant fight against Batten disease. I’ll make a donation to Taylor’s Tale after the race, and and I’m also asking friends to give anything they can in support of my run. I’ll post my results here on Sunday, April 22.

To make a gift to Taylor’s Tale on behalf of my race, visit my fundraising page here, scroll to the Support My Cause section near the bottom of the page and enter your donation amount in the space provided. All gifts are 100 percent tax-deductible.  Thank you for your support!

Things I’m Thankful For, Part I

By Laura Edwards

In honor of the upcoming Thanksgiving holiday, I’ve decided to pen a new entry on each of the next four days, with each post dedicated to something for which I’m thankful.

Tonight, I’m thankful for my ability to see. I’m blessed to possess two eyes that, with the assistance of contact lenses or thick glasses, receive reflected light and usher it through first the cornea, then the pupil, then the lens, and then the retina, where, finally, it is converted into electrical impulses and sent to my brain, where an image is produced. This is an amazing process that took nearly three full lines to describe but that in reality happens instantaneously and without requiring any thought or effort on my part. Since I was 9 years old, I’ve had a hard time climbing out of bed in the morning without first putting my glasses on, but once I do that, the world is crystal-clear.

I’m thankful for all of the visual memories that will forever remain preserved in my heart. This very instant, I can see the way the sunlight trickled through the leaves of a certain tree whose canopy watches over a sidewalk that runs alongside the Undergraduate Library on the campus of the University of North Carolina. I used to take that sidewalk to South Campus just so I could walk through that dappled light. Now, I can see the fountain at SouthPark Mall in my hometown, as well as the thousands of pennies slumbering under the water’s surface, and my dad’s face as he tells me, his only child, a story, and the scoop of mint chocolate chip ice cream perched atop a sugar cone from the Baskin Robbins, the closing of which left me in tears. (I immortalized that particular memory in the novel I never finished once the doctors discovered the terrible truth about my sister’s genes.) Now, I can see my great-grandmother’s laugh – because she laughed with her eyes – as she watches a funny movie with me in her basement, an ice-cold can of “Co-cola” in her hand and an unfinished game of Chinese checkers on the coffee table. Now, I can see my husband’s face as he asks me to marry him on the sidewalk in front of my grandparents’ house in Wake Forest, North Carolina, where we spent our first wonderful long weekend together as best friends just three days before he asked me out (not the first time he asked, but the first time I said “yes”) during the first semester of our senior year of high school. Now, I can see my little sister’s beautiful, working eyes focus on me as she runs to give me a hug.

I graduated from college in the spring of 2004, and that tree beside the library is no longer a regular part of my life. The SouthPark Baskin Robbins is so long-gone that most people living in Charlotte these days probably don’t even know that it ever existed. My great-grandmother passed away a few years ago, and I never got to tell her goodbye. My husband and I are still as in love as we were on our wedding day, but my grandmother is very sick, and the house where John asked me to marry him was sold two months ago. And my sister has not made eye contact with me in a very long time, because Batten disease came along and decided that she doesn’t deserve to see. So I cherish photos I took of her more than a few years ago – the ones in which she is looking at the camera. And more than ever, I cherish each and every moment spent with my blind sister. I cherish the miracle that is her presence in my life, and I hate the disease that wags its finger at me every day, tells me to stop fighting back, and tells me I should be satisfied with the memories I already have and stop dreaming of making more.


By Laura Edwards

Early yesterday morning, I ran in the Tar Heel 10 Miler road race on the streets of Chapel Hill and the campus of my alma mater, North Carolina. The chilly, dew-kissed April morning danced on my skin; centuries-old buildings, hot pink and white azaleas and blooming dogwoods provided the landscape. I jogged through the historic Gimghoul district, down streets I’d never visited as an undergrad, up steep hills on heavily trafficked roads and down a wooded lane past the character-rich Forest Theater. And, about an hour and a half after the starting horn sounded, I entered a sun-filled Kenan Stadium for one lap around the track before crossing the finish line – the 944th runner in the field to do so.

I didn’t come close to winning this race and never will – not in my short-distance runner’s body, and not as long as I’m dependent upon the joints I’ve all but ruined on the soccer field. Nevertheless, I experienced beautiful pockets of Chapel Hill for the first time. I got a great workout. I had fun. I had an excuse to spend the weekend with my best friend from college, who still lives near Chapel Hill. And I shaved three minutes off my per-mile pace time since my last race – a half marathon in December. Yes, 943 people beat me to the finish line – but I achieved every single one of my goals.

Batten disease is different. There is no margin for error, no success sweet enough to overcome the loss of children – something that happens everyday. I don’t do what I do – write this blog, run board meetings, pray, you name it – to finish in the middle of the pack. I don’t do it to feel good. It helps me believe, but it doesn’t feel really good yet, because we don’t have a cure. Sometimes, I get too caught up in the details – the mechanics – of what Taylor’s Tale is trying to do. When that happens, I call my parents and ask them what they’re up to. If I can, I’ll go see my sister – kiss her on the top of her head, ask her for a hug, take a walk with her, or snuggle on the couch to watch a movie. If I can’t see Taylor in person, I’ll ask my parents to hand her the phone. If she’s watching TV, I’m not apt to garner very much of her attention. I’ll get a ‘Hi Laura’ right when she takes the phone. If I’m lucky, I’ll also get a few other words before she hands the phone off to get back to her show. But it’s enough. In my world, being able to call my sister and ‘talk’ to her – even if it’s a one-sided conversation – is a blessing. I stopped taking more for granted a long time ago. No matter how I re-center myself, I always manage to do so, somehow.

Time wasn’t the most important element of my race yesterday. Crossing the finish line was enough. When it comes to Batten disease, though, time is everything. Every month that goes by without a cure, more children die. I’ve never stopped believing that we can cure this awful disease. I know we’ll cross the finish line someday. For the sake of all of the children who need our help NOW, though, my goal is to run FASTER. If I coast, they lose – and one day, I will lie awake in bed at night, wishing I could have one of those one-sided phone calls with my sister again.