I May Have to Crawl…

Published: September 2, 2013  ~   3
By Laura Edwards

ankle icingBecause the ligaments in my ankles are like old rubber bands, I guess it’s only fitting that I twisted my ankle – again – during an activity that has nothing to do with running or sports. A couple of weeks ago, I sprained my right ankle running after dark, with a blindfold over my eyes (the ugly scab on my left knee in the photo is a souvenir from that fall). Today, I sprained my other ankle trimming my roses. I wore Adidas sandals down to the mailbox; I guess this means that I need to break out my ankle braces for gardening from now on.

My ankles (both of them) will be okay, like they always are. I’ll ditch running for the time being, like I did this afternoon, and the swelling will subside. The “nice” thing about having ankles like mine is that I don’t have much left to injure, so my recovery time is better than most. As for my long-term health, I try not to think about it too often.

I wouldn’t be in this position if not for a three-month period during my senior year of high school in the spring of 2000. That February, I sprained both of my ankles during preseason practice with my school’s soccer team. I should have taken time off from playing; instead, I went to the athletic training room every day at 2:30 for an ice bath and a double-layer tape job with athletic tape and moleskin, which went under orthopedic braces. I played in every practice and every game that season; once, I went to school on crutches, then took two ibuprofens, went to the trainer for my tape job and played all 100 minutes in a double-overtime win over our arch-rival.

It sounds crazy, but for an 18-year-old with a dream of playing at the next level, it made perfect sense at the time. And that spring, despite my injuries, I had more fun on the field than I’d ever had in all my years of playing soccer. I played with my best friends, the underclassmen looked up to me, and my coach saw enough in me to risk my long-term health for the good of the team. At least, that’s how I looked at it.

This isn’t a blog about soccer, and it isn’t a blog about my senior year of high school. But whenever I remember those days now, I think about how my sister, Taylor, has been robbed of similar experiences. Not the ankle injuries – I’ll keep those for her sake – but finding something she loves so much that she’d play through pain to avoid missing out on a single moment; end-of-season pizza parties and team sleepovers and out-of-town tournaments and long bus rides back from state playoff games; the joy of winning, the heartbreak of losing and the indescribable feeling of being part of something bigger than yourself.

That’s why I won’t let anything stop me from running for Taylor at Thunder Road. If my ankles don’t shape up, I may have to crawl. Without my vision, I may record the worst half marathon time of my life. But on Saturday, Nov. 16, I’m crossing that finish line blindfolded for my sister. I’ll never drop out of this race, and I’ll never stop fighting Batten disease for her.

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!

The Way Sisters Do

Published: September 1, 2013  ~   4
By Laura Edwards

John and I met my parents and Taylor, my brother and his girlfriend and my in-laws at one of our favorite Charlotte restaurants for dinner last night. We took up residence at one of the restaurant’s largest tables for close to two hours, ate way too much authentic Italian food and laughed just the right amount, though probably too much for the comfort of our immediate neighbors. We had a fun two hours.

Toward the end of the night, I pulled out my camera. I got some good-natured eye rolls, but I believe in capturing happiness.

I snapped a picture of my brother, Stephen, and his girlfriend, Jessica:

Stephen and Jessica

Then, I passed the camera to my mom so she could get a shot of my husband and me:

Laura and John

My mother-in-law just couldn’t get into the whole photography thing, but I made her smile for the camera anyway:

Rosemary and Bill

My dad hid at the end of the table, but I wouldn’t put the camera away without getting a picture of my mom and Taylor:

Mom and Taylor at Portofino

I haven’t talked to my sister in a long time. As I looked at her through my camera’s viewfinder, it occurred to me that she had not been part of any of our laughter or conversation over the past two hours. And I realized that I don’t know how she feels, what she wants or what she would say if we could chat the way sisters do. I lowered the camera for a split second, and in her beautiful eyes – eyes that used to see colors and shapes and smiles – I saw sadness and loss, but I also saw courage.

I’ll fight Batten disease for a long time – forever, if that’s what it takes. Taylor’s still fighting. Batten disease hasn’t taken my sister’s life yet. But Batten disease already stole my sister.

Blind Training with a Pinch Runner

Published: August 24, 2013  ~   0
By Laura Edwards

Running isn’t much different from riding a bike without training wheels. Once you know how to put one foot in front of the other, you’ve basically got it. My mom says I look funny when I run. She may be right – the uneven wear on the soles of all of my running shoes betrays my weird gait – but it works. I still have blue ribbons I won for the 50-yard dash in elementary school, and for 20 years, no one could outrun me on a soccer field.

But running blind is a whole different story. In less than three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor my sister and support the fight against Batten disease. I started training with my sighted guide, Andrew Swistak, on June 5. Since then, I’ve fallen once, sprained both ankles and torn up a knee. That’s why, if I expect to cross the finish line in one piece on race day, I need as much practice as I can get.

Andrew and I can’t always get together, though. I’ve learned a lot of lessons doing this blindfolded running thing, one of which is that we’re both very busy people! So this morning, I informed my husband, John, that he had to pinch run for my sighted guide.

“That’s right, honey,” I said, handing him one end of the three-foot bungee cord that serves as my lifeline during my blind runs. “Be my eyes, and you won’t get any new medical bills.”

We hit a few rough patches where we couldn’t get our spacing right, and I clipped his feet. Running with my husband in broad daylight helped me understand just how in sync Andrew and I became after only a few runs in the dark. But we got the hang of it, and we even picked up speed at the end. Best of all, I didn’t fall or re-injure my ankles!

Near the end of our run, John pulled to a stop and told me to open my eyes (I didn’t have a blindfold today). Right when I did, a deer crossed the road in front of us. And then, just like that, it disappeared into the trees, and I closed my eyes and started running again.

Later, I thought about how Taylor would have missed that deer. I blind myself by choice for these runs and will blind myself for Thunder Road, but I can recover my vision at any time. Taylor doesn’t have that luxury; a monster called Batten disease stole her vision and a lot of other precious things from her.

And that’s why I run.

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!

My Birthday Wish for Taylor

Published: August 18, 2013  ~   3
By Laura Edwards

birthday cakeMy 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!

The World’s Third-Most Populous Nation

Published: August 8, 2013  ~   1
By Laura Edwards

Thirty million Americans have a rare disease. Globally, if all of the people affected by a rare disease lived in one country, they would make up the world’s third-most populous nation. And according to the National Institutes of Health, half of all people with a rare disease are children.

These are serious numbers. Rare diseases are real. They don’t just strike anonymous people you read about in magazines or see on TV. They strike your own family members and friends. Ten percent of Americans have a rare disease. If you have 30 classmates, three of them have a rare disease. If you work at a company with 1,000 employees, 100 of them suffer from a rare disease.

I have one sister – out of all the people in the world, my closest genetic match. I don’t have a rare disease. But Taylor does. She has a fatal disease without a known cure or even a single FDA-approved drug treatment.

It’s tough to describe the devastation of Batten disease in a paragraph. It causes blindness and seizures. Kids like Taylor lose their speech and their ability to walk. They end up with feeding tubes. We call Batten disease a “brain” disease, but it ravages the whole body. Calling it a brain disease is like letting it off easy.

But for now, all we can do is throw pebbles at the monster wreaking havoc on my sister’s body. She takes a drug to help prevent seizures, plus a million pills off-label. She does physical therapy like a champ. And Batten disease marches on.

Taylor pool therapy

Taylor’s closest to my heart, but her story’s far from unique. When it comes to rare diseases, ineffective and/or temporary solutions for the symptoms are the norm, not the exception. This is an expensive approach that offers little quality of life or long-term hope for the millions of people like my sister. It is a public health problem, and we can all be part of the answer.

Initiatives like the Breakthrough Therapy Designation and Accelerated Approval for Rare Diseases can help pave the way to a better future for the rare disease community. At a recent briefing about FDA approval pathways, a cystic fibrosis patient talked about how a drug called Kalydeco, one of the first Breakthrough Therapies to market, has changed his life. The patient said that the drug, which treats the underlying effect of the disease and not just the symptoms, “profoundly changed his life because for the first time, he felt that he could look forward to becoming a grandparent one day, whereas the average lifespan for CF sufferers is 37.” (FasterCures, Aug. 6, 2013) 

I’m reading “The Forever Fix,” Ricki Lewis’ book about gene therapy and the world of patients exploring the frontiers of medicine – our world. In the book, Corey Haas, born with a rare eye disease called Leber congenital amaurosis (LCA), receives gene therapy and sees bright sunlight and fireflies for the first time.

Back when Taylor could still share her hopes and dreams with me, she told me she wanted to drive a pink convertible like Sharpay from “High School Musical” and have a dog and go to college and get married.

I don’t know what tomorrow holds for my sister. But I know that I want to give people like her the opportunity to look forward to milestones. I want to give them the miracles of life, both great and small. I want them to be able to watch the sunrise and count the fireflies on a warm summer night.

Taylor’s Tale is a leader in the fight against rare diseases. Send us a note to ask how you can get involved.

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.

Mom on trackMeanwhile, 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!

Someone has to Run for T

Published: July 30, 2013  ~   2
By Laura Edwards

I run races year-round. Twenty years on the soccer field did a lot of damage, and I deal with injuries all the time. But on Nov. 16, I’ll run the most important race of my life, and I’m not taking any chances. Early that morning, I’ll pull a blindfold over my eyes and honor the five-year anniversary of my little sister’s first 5K at Charlotte’s Thunder Road Half Marathon. So this morning – the start of my third day with an obvious limp – I took my balky ankle to see my sports medicine doctor for an exam and X-rays.

The good news is that I don’t have any broken bones, and the weird stuff my doctor saw was already there on an X-ray from 2010 (which doesn’t say much for my long-term joint health but bodes well, I suppose, for THIS race). I went home with a prescription for two weeks’ off from weight-bearing activities, running included, and frequent icing.

I’m one of the world’s worst patients, because I can’t stand to sit still. But this time, I’ll listen. I’m on a mission, and I won’t do anything to threaten it.

After my appointment, I sent a message to my mom, who has never run a race of any distance but will run the Thunder Road 5K for Taylor’s Tale. I promised to coach her to her goal of running 3.1 miles this fall, and in my message, I offered to meet her at the indoor track tonight to lift weights and provide instruction from the sideline.

Nine minutes later, she responded:

“On the treadmill right now. Someone has to run for T!”

Mom on treadmill

What does a go-getter like my mom need with a gimpy coach like me, anyway? Sans instruction, Mom logged 30 minutes on the treadmill, alternating two minutes of walking with three minutes of running at 5.2 miles per hour. One week ago tonight, Mom ran for the first time; as she took her first strides, she told me she didn’t know if she could run 3.1 miles without stopping. When she hits the open road on race day and breathes in the clear, cool November air, she won’t remember saying those words.

Besides, she didn’t really mean them. Because she’s my mom. And my mom ALWAYS believes.

I believe, too. I believe in my mom; I believe that my ankle will heal; I believe in Taylor’s courage; I believe that we can achieve our dream.

You can join my mom, my sighted guide and me on the Taylor’s Tale team at the Thunder Road races on Nov. 16. Scroll down to learn how, and stay tuned for more details!

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.

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!

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.