My Birthday Wish for Taylor

Published: August 18, 2013 ~ 3

By Laura Edwards

My sister, Taylor, will turn 15 on Monday. Taylor’s less than half my age, but she’s my hero. She’s done some pretty incredible things in her short life – like run two 5K races despite the fact that she’s blind and suffers from Batten disease, which is pretty much the worst disease on the face of the earth. That’s why, in three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor her and help find a treatment for Batten disease.

I’ve had the same birthday wish for Taylor every year since her diagnosis in 2006. I want a world where people like my sister can dream of growing old. I believe in that world. Tomorrow, in honor of my sister’s birthday, you can do one of three things to help Taylor’s Tale achieve that dream:

Sign up to run for Taylor at Thunder Road on Saturday, Nov. 16, and help us turn the course purple for Taylor’s Tale. You can run the marathon, half marathon or 5K. Note: blindfold not required. 🙂 Be sure to join our team during the registration process. 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 honor Taylor and help raise awareness of Batten disease on race day. In return, you’ll receive a moisture-wicking team shirt and an invitation to an optional post-race get-together. Stay tuned for more details! Click here to register now.

Make a gift to Taylor’s Tale in honor of Taylor’s birthday and help support our fight against Batten disease and other rare and genetic diseases. All donations are 100 percent tax-deductible. We fund research that has the potential to lead to treatments for human beings. We’ve supported work at top institutions in the United States and Europe. Today, we’re co-funding work at the University of North Carolina that could lead to life-saving gene therapy for Batten disease and many other genetic diseases. To make a donation, click here.

Run 3.1 miles – or a 5K – for Taylor on her birthday, Aug. 19. Visit our Facebook page and share a post about your run. Be creative – share a photo or a description of your run, or just tell us that you did it! You can also connect with us on Twitter. Share your run with us on Facebook and Twitter.

Thank you for helping us write the happy ending to Taylor’s Tale!

Carrying the Torch

Published: August 7, 2013 ~ 0

By Laura Edwards

I’m past the halfway point of the two-week rehab period prescribed by my sports medicine doctor, and I’m ready to get back on the road for Taylor. I don’t have any swelling in my sprained ankle, and the pain is much better this week than last. I’ve practiced the art of icing with a frozen cup of water; I kick off my shoes to do this at the office at least once a day, so I’m grateful for understanding coworkers. Barring any new setbacks, I should be back in a blindfold by sometime next week, just in time for the three-month countdown to Thunder Road.

Meanwhile, my mom’s carrying the torch for both of us. I thought I’d be able to publish a new post for each of her training sessions, but I’d never sleep. By my count, Mom’s made it to the track or the treadmill three times since her coach went down last week. She even went to Run For Your Life and bought new running shoes! Last night, I joined her at the Y near our house and lifted weights while she ran laps. Once, I crept to the corner of the stretching area with my phone and hid behind a weight machine until she came down the straightaway. I jumped out just in time to capture a photo of her. Mom didn’t stop, but the next time she came around, she tried to sneak a peek at my camera roll and get me to agree to approval rights.

Mom will be ready for Nov. 16, and so will I. You can join us and help save kids like Taylor. Just visit the Thunder Road website to sign up for the 5K, half marathon or marathon. If you run for the Taylor’s Tale team (available in the list of groups/teams), we’ll provide a moisture-wicking shirt and a fun post-race get-together. More details to come! In the meantime, please consider supporting our cause with a donation (see how below). All gifts are 100 percent tax-deductible and will support gene therapy at the University of North Carolina.

See you on the road…soon!

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 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!

When to Fold a Hand

Published: July 28, 2013 ~ 0

By Laura Edwards

In case you haven’t heard, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor my sister and support the fight against Batten disease and other rare diseases on Nov. 16. I’m a seasoned runner with a drawer full of half marathon and 10-miler race medals. But I’ve never run a race of any distance without my vision, so my training for this race is unlike anything I’ve ever done before.

I returned from a long weekend in the North Carolina mountains this afternoon and made plans for a late-night run with Andrew Swistak, a good friend and my sighted guide for Thunder Road.

But just an hour after I messaged Andrew, I aggravated the still-weak ankle I injured on our first training run, all the way back on June 5. I don’t have any idea how I hurt it; I felt a sharp pain walking from my back door to my kitchen. In any case, I’ll be brushing up on my R.I.C.E. skills (rest-ice-compression-elevation) right about the time that Andrew and I would have met at my mailbox for blindfolded run number eight.

I’m frustrated about this latest setback, which may end up being nothing more than a one-day punishment – perhaps my body’s gentle way of telling me that I wore the wrong shoes to traipse around downtown Asheville, NC for two days. I’m sorry I won’t squeeze in a practice run tonight but am grateful, really, that logic won out in the end. Because the last thing I need is an injury I can’t overcome.

My sister’s fight against Batten disease has its ups and downs, too. She has good days and bad days. She has a heck of a lot of courage – far more than I’ll ever have – but even so, some days, the disease still gets the best of her. For her sake, we have to know when to fight back with everything we’ve got, and when it makes sense to fold a hand so we don’t lose all our chips in the end.

I might be taking tonight off, but I’ll drag my body – bum ankle and all – back out on the road as soon as I can. And I’ll cross that finish line for Taylor on race day, even if I have to crawl. You’d better believe I’ll fight for my dream – to save the lives of people like her – until we win.

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.

Just a Little Rain

Published: July 25, 2013 ~ 0

By Laura Edwards

Summer always flies after the Independence Day fireworks. August will be here next week, it will be a blur, and autumn will arrive. On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of my little sister’s first 5K race and support the fight against Batten disease. But I’m not ready to run that race today, which is why, as the last full month of summer drew near, I became concerned that my sighted guide and I last ran together on July 1.

storm quote

But Andrew is as committed to this cause as he is skilled at guiding a sighted person wearing a blindfold on the run. So, despite a steady, warm rain, he climbed up my mountainous driveway at 10 last night, took one end of the three-foot bungee cord that is my lifeline and led me down the hill into my dark, wet world.

We ran approximately 3.1 miles – or a 5K – in the rain. I didn’t take my phone, and I heard a beep that told me my Garmin had died about five minutes after we left, but Andrew told me we averaged about an eight-minute mile or just a little over.

My first six blindfolded runs opened my eyes to a whole new world of sensory experiences. My seventh introduced me to an entirely different one; because I didn’t see the raindrops as they fell from the sky, I felt as if I discovered something new each time one made contact with my skin. I never knew exactly how to describe the way a raindrop feels; I still can’t put it into words, and yet, I understand it on a whole new level.

I would never want to give up my vision. At the end of all of our runs, when Andrew announces that we’ve arrived at my mailbox, I respond by taking off my blindfold. I’ve never tried to say goodbye or climb my driveway or walk inside without my eyes. But a long time ago, Taylor taught me that life is about taking what you have (or don’t have) and making the best of it. It’s about finding beauty in tragedy. It’s about learning to dance (and run) in the rain.

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.

A Midsummer Morning

Published: July 24, 2013 ~ 0

By Laura Edwards

On July 24, 2006, Mom called me at work to tell me that my then 7-year-old sister, Taylor, has Batten disease – a fatal brain disorder with no known cure.

I stumbled out of my desk chair and toward the stairs, pausing at the open door of our director’s office just long enough to tell her that I had to go home to my family. Then, I raced down the stairs and into the blinding sunshine of the midsummer morning. Outside, the world went about its day. But my insides burned.

When I ran down those stairs, deep inside, I knew I’d come back.

But I’ve never been the same.

Just the Beginning

Published: July 23, 2013 ~ 2

By Laura Edwards

My mom, Sharon King, has never run a race. But on Nov. 16, she’ll be in the 5K field when thousands of runners fill the streets of uptown Charlotte, NC for the Thunder Road Marathon, Half Marathon and 5K.

My mom can do anything she puts her mind to, whether or not she believes it. She doesn’t need my help. But I agreed to coach her to her first 3.1-mile finish and look forward to spending the next few months “on the road” together even as I work toward my own goal of running the half marathon blindfolded in my little sister’s honor.

Mom running

We hit the indoor track for our first training session tonight. I thought we’d average 12-minute-plus miles, but as soon as I hit the “start” button on my Garmin, Mom took off. I don’t like to do anything halfway, but I come by it honest.

We alternated 0.2-mile jogs with two-lap walks on the 1/12-mile track. Toward the end of our run, Mom picked up speed and sharpened her focus, and I fell back to snap a secret photo of her in stride.

We hung it up after a mile; I know the dangers of overdoing exercise as well as anyone and want to warm Mom’s joints up to the idea of this whole running thing. But while we didn’t break any distance records, we got off to a great start. My mom, the non-runner, averaged a 10:28 mile and would have gone faster had she not had me in her ear telling her to slow down on some laps.

I might be able to convince Mom to take it easy on the track, but in the real fight, there’s no room for that. Tomorrow is the seven-year anniversary of Taylor’s Batten disease diagnosis. We’re not slowing down any time soon, and we’ll never, ever give up for kids like my sister. I can’t tell you what the clock will say when we cross our respective finish lines on Nov. 16, but you can count on us to keep fighting.

The Thunder Road Marathon, Thunder Road Half Marathon and Thunder Road 5K have plenty of room for other Taylor’s Tale supporters. If you’re interested in running to honor Taylor and support Taylor’s Tale, the 501(c)3 non-profit organization we founded to fight Batten disease and other rare diseases, please contact us.

Uneven Ground

Published: July 14, 2013 ~ 0

By Laura Edwards

On Nov. 16, I’ll run the Thunder Road Half Marathon blindfolded to honor my little sister’s fight against Batten disease and raise money for gene therapy at the University of North Carolina. Since early June, I’ve gone on six training runs with my sighted guide, Andrew Swistak, and we made more progress in those first six runs than I ever dreamed possible.

But I haven’t run in darkness since July 1. I’ve been on vacation for a week, and our schedules don’t jive in the coming week. I’ll keep my fitness level; running is part of my life, whether or not I’m training for a race. But I’m not blind, and running without my eyes isn’t like riding a bike without training wheels. It takes practice. So I expect to be a little rusty the next time I pull a blindfold over my eyes and grab hold of my lifeline, a three-foot bungee cord.

I’ve been on the South Carolina coast for the past week, and I laced up my third-string Brooks Glycerin shoes – the ones that have about 800 miles on them – for a couple of runs on the beach. On a late afternoon run at low tide, I thought about my long stretch without any practice runs with Andrew and wondered if I could survive a near-deserted, flat area of the beach with my eyes closed.

I started my experiment on the part of the beach between the powdery dry sand that the waves never reach – ankle-breaking sand – and the damp sand that just hours before had been underwater. I scanned the beach ahead of me for tidal pools and child-dug holes, saw none, said a silent prayer and closed my eyes.

Ten seconds later, the surf filled my tired Brooks shoes. The tide didn’t change; I just veered off course by seven or eight feet in those 10 seconds.

I kept my eyes open the rest of the way.

My self-imposed lesson brought back a memory of a hot summer afternoon at the same beach six years ago. Taylor’s vision had already begun to fail her, but otherwise, she was still the happy, vibrant, healthy kid we knew.

Despite her vision loss, Taylor could run from our chairs to the ocean and back again, low tide or not. She had one hell of an internal compass, and she had no fear.

I’ve never been as fearless as my little sister. Even in that 10-second experiment on the same beach Taylor once ruled in summers that are now only a memory, I feared that I might re-injure my ankle or trip over a child running out of nowhere to chase a seagull or catch a wave.

Like it or not, those smooth, wide beaches are in our past. The path ahead is uneven ground. I’ll need at least an ounce of my sister’s courage to keep going. And whether I run one blindfolded race or one hundred, I’ll need to keep my eyes wide open for the real fight.

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.

My Turn to Coach

Published: July 11, 2013 ~ 2

By Laura Edwards

My mom, Sharon King, walks to stay in shape. She’s not a runner and says she’ll never be a runner.

Last year, we walked the Run the Creek 5K together in support of the Batten Disease Support & Research Association. When the finish line came into view, without warning, Mom gave me a gentle push and goaded me into a two-woman race. Then, she broke into a sprint and cackled as she crossed the finish line a split second ahead of her runner daughter.

Mom hasn’t let me forget that she beat me that day. But she’s never run a 5K from start to finish – something my sister Taylor, who’s blind and suffers from Batten disease, did twice.

On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K. And about 30 minutes after my sighted guide, Andrew Swistak, and I each grasp an end of a three-foot bungee cord and I pull the blindfold over my eyes to begin my first-ever blindfolded half marathon, Mom will join a mass of people for the start of the event’s 5K.

Mom says she’s not ready to run that 5K today. But Andrew’s done a great job coaching me to run in a dark world, and now it’s my turn to coach. Over the next four months, I’ll alternate between meeting Andrew for blindfolded runs on the Charlotte streets and meeting Mom at the Y for 5K training. We’ll start by alternating between running two minutes, then walking two minutes. We’ll work up to a mile, then two, then three.

By race day, Mom will be a force on that 3.1-mile race course. She may not believe in her ability to run a 5K from start to finish, but I do. Because she told me today that she’ll run it for Taylor. And I’ve never known my mom to fail at anything she said she would do.

The Thunder Road Marathon, Thunder Road Half Marathon and 5K have plenty of room for other Taylor’s Tale supporters. If you’re interested in running to honor Taylor and support Taylor’s Tale, the 501(c)3 non-profit organization we founded to fight Batten disease and other rare diseases, please contact us.

Competition

Published: July 2, 2013 ~ 0

By Laura Edwards

4TAYLOR

After an eight-day hiatus from running, I laced up an ankle brace, slung a three-foot bungee cord around my shoulders and knotted a blindfold above my ponytail. At 10:11 p.m., I met my sighted guide, Andrew Swistak, at the foot of my driveway. I said a silent prayer for no errant curbs or potholes and pulled my blindfold down over my eyes. Together, we took off into the black night for blindfolded run number six.

Andrew avoided tight cul-de-sacs out of respect for my ankle, and my ankle brace did its job. We kept it short and slow, logging 2.56 miles in 25:24 – a 9:53/mile pace. I averaged about an 8:53/mile pace at the Thunder Road Half Marathon last fall, and I know we have some work to do if we want to approach my normal speed. It helps to remember that the Thunder Road course will feel like one of those deserted, flat, two-lane highways stretching into infinity from old Western movies compared to the loopy streets of my neighborhood, which require lots of tight turns and verbal direction from Andrew and unquestionably slow us down.

I’d like to become a faster blindfolded runner. But the truth is that I’m only doing this for people like my sister, Taylor, and when it comes to the fight against Batten disease and other rare diseases, I really don’t care who crosses the finish line first. It’s not a competition.

I’ve always thought that running can be a very lonely sport until race day. But the fight I fight for my sister every day is a team effort. I’ve met a lot of teammates since July 24, 2006 – the day we learned that Taylor has infantile Batten disease. I believe in Taylor’s Tale, the non-profit organization I co-founded in her honor, with all of my heart. On race day, I’ll wear the color purple for Taylor’s Tale, as I always do. Just before I lace up my shoes, I’ll use a purple marker to ink the phrase “4 TAYLOR” down my left arm, opposite my Taylor’s Tale wristband. But whether it’s our name or someone else’s in lights the day kids like my sister no longer have to suffer, I don’t care.

Today, we don’t have a treatment for people like Taylor. Doctors still tell families like mine to take their kids home and love them and make happy memories, because there’s nothing else they can do. A treatment is the only finish line I care about. So until we have one, I’ll just keep on running.

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