Why I’m Still Fighting Rare Disease

Published: December 21, 2014 ~ 2

By Laura Edwards

By Sharon King

I checked on Taylor as she was sleeping this morning. She had the most beautiful and peaceful smile. It was one of those precious moments you remember forever. I wondered what she was dreaming. I often wonder what she feels, thinks, dreams and fears. Batten disease really has a hold on her now, but we still try to give her the most normal life possible. Whatever she feels, thinks and dreams, we pray for happiness and peace for things she may fear. That’s really no different from what any parent wishes for his or her child.

Parents commit to helping their children follow their dreams and giving them the tools to battle their fears. But when your child has a life-threatening, rare illness, parenting takes on a new dimension. Serving as a guide for dreams come true and battling monsters becomes bigger than our children. For many of us, it becomes more about all of the children past, present and future whose dreams and fears include rare disease. I’m there.

It’s been nine long years since Taylor’s diagnosis. I imagine many people wonder why I continue to fight, why I still believe.

Rare is not an excuse. It’s too darn easy to write off rare disease as “unfortunate.” It’s definitely unfortunate, but it happens more often than you might expect. There are approximately 7,000 rare diseases and disorders, and more are being discovered each day. Thirty million people in the United States are living with rare diseases; globally, it’s estimated that 350 million people suffer from rare diseases. About half of these people are children; 30 percent of them will not live to see their fifth birthday.
The costs are enormous, both in terms of human suffering and economic impact. According to our partner, the EveryLife Foundation for Rare Diseases, 95 percent of rare diseases don’t have a single FDA-approved drug treatment. During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined. Taylor takes multiple drugs, and we continue to add expensive medical equipment. Since January 2014, she’s visited the ER three times (once via medic) and had two separate hospital stays (one for six nights). All of this, and just to treat her symptoms—not the root cause of her disease. Just imagine the costs for Taylor alone in 2014. Then, multiply that by 30 million. Wait…go ahead and multiply the number in your head by the worldwide number of 350 million people. You can’t imagine it. It’s mind-boggling. What we have is a serious public health problem.

Did I give rare disease more than a passing thought before Taylor’s diagnosis? No, of course not, and if I did, it likely sounded something like, “Glad it’s not my family or me.” I know better now.

The problem of rare disease belongs to all of us. Each of us can do something to help. Significant progress can happen with greater awareness, advocacy and funding. And in the coming weeks leading up to Rare Disease Day 2015 at the end of February, I’m inviting other rare disease advocates to share their thoughts on how we can all get involved and make a difference.

We know the facts. The question is, will we talk, or will we ACT? Hope requires action, and there are 350 million people who need your help.

Yesterday, the Charlotte Observer printed this quote, always one of my favorites:

“I dwell in possibility.” ~Emily Dickinson

Please join Taylor’s Tale in creating new possibilities for people like Taylor. Together, we can change lives.

Wishing you joy, peace and beautiful dreams this holiday season and into the New Year.

Do you have an idea for how the average Joe or Jane can make a difference in the fight against rare disease? How can citizens help millions suffering from rare disease by applying their skills in areas like awareness, advocacy and fundraising? Leave a comment below or send us a note to join the conversation.

Just Words on a Page

Published: January 27, 2014 ~ 2

By Laura Edwards

Yesterday, I did the most amazing thing: I scheduled my day. My husband promised a friend he’d help him with a home improvement project that I suspected would turn into an all-day affair. I had a couple of tasks I wanted to accomplish with my Sunday of solitude. I not only made a list – I scheduled the items into specific blocks – and I told myself if the time on a task ran out, that’d be it.

After I organized my notes from interviews for a book-length project and went for an eight-mile run in the January sunshine, I worked on PR for the piano playathon, an annual event benefiting Taylor’s Tale and the fight against Batten disease in Raleigh, NC. Two hours before the UNC-Clemson basketball game, I took a cup of decaf coffee, a blanket, my snuggly dog and a book I’m reading for fun (I love to read, but it doesn’t happen often) up to my reading nook by the front window in my bonus room.

For awhile, I lost myself in the book, a novel set in post-Civil War Virginia. As I soaked up the silence and watched the late-afternoon light dance on the spines of books I’ve collected for almost three decades, I thought about how my sister, Taylor, who taught herself to read before she graduated from the preschool class at our church, can no longer enjoy the stories that fill the pages of the books lining the shelves in her own room.

When we learned Taylor would lose her vision, she began working with Jill, a VI specialist (teacher for the visually impaired). My sister learned the letters of the braille alphabet. She learned how to string the letters into words and the words into sentences. She showed me the correct way to read the raised dots of the braille alphabet with my fingertips, even though, because I’m not blind, it would have been easier for me to learn how to read the letters with my eyes. She learned how to type on a Perkins Brailler, a braille typewriter. She typed braille notes for me and made a braille birthday card on fire engine red construction paper for my 27th birthday. Her teacher, Jill, wrote the words underneath the raised dots, because, unlike my little sister, I never mastered the braille alphabet.

But then Batten disease stole braille from Taylor, too. My sister is the girl who, not so long ago, foiled her church preschool teachers’ idea to help the other kids learn to read when she skipped down the hall and announced the names printed in neat, block letters above each cubbyhole. But then her eyes quit on her, and a few years later, her fingers quit on her, too.

You could say the books lining my shelves are just things. You could say the stories they share are just words on a page.

But while they’ve brought me great joy, they’re another symbol of all my sister has lost; of all she stands to lose.

I’ve heard something about this story.

I don’t like the way it ends.

2013: The Memories

Published: December 29, 2013 ~ 2

By Laura Edwards

As the sun sets on 2013, our seventh full year fighting the war against Batten disease, I know in my heart that in many ways, the story has just begun.

On Jan. 4, we remembered my Grandma Kathryn, an angel in life who earned her wings on Christmas Day 2012. My grandmother, who loved her grandchildren more than she loved her own life, urged us to fight the demon from the moment we got Taylor’s diagnosis in the summer of 2006. She had no way of knowing that she, too, had a tragic neurodegenerative disease lurking inside of her. There was nothing she wanted more than an answer for the disease that dared to steal her granddaughter’s life. I fight for Taylor, but I fight for Grandma Kathryn, too.

On Feb. 28, World Rare Disease Day, Taylor’s Tale announced that we had joined an international coalition to fund gene therapy research at the University of North Carolina. Dr. Steve Gray and his mentor, Dr. Jude Samulski, are not the only talented scientists working on Batten disease. But I believe in them because of 1) what I’ve learned about the science of Batten disease in seven-plus years, 2) what I’ve been told by their respected peers and 3) something in my heart that I can’t describe. And I believe in my heart that if we can continue to fund this project, we’ll have a clinical trial for kids like Taylor in a few short years.

For the fifth consecutive year, music students and teachers held a playathon for Taylor’s Tale in Raleigh, N.C. Their efforts raised thousands of dollars and a great deal of awareness for our fight against Batten disease. I love these kids and their teachers. This event is special.

In April, Taylor’s former classmates at The Fletcher School held their second cardio craze fundraiser with local celebrity Andre Hairston. They turned a school gym into a sea of love and hope.

On June 1, I announced my plan to run the Thunder Road Half Marathon blindfolded to honor Taylor and support the fight against rare diseases.

Eleven days later, Mom spoke at the National Institutes of Health (NIH) on behalf of Hannah’s Hope Fund. Mom and Lori Sames, founder of Hannah’s Hope, delivered amazing speeches, and Hannah’s Hope gained approval from the Recombinant DNA Advisory Committee (RAC) in its quest to begin a human clinical trial for another childhood neurodegenerative disease called GAN.

This year, Taylor’s Tale also welcomed new board members. Our first- and second-year board members have made an incredible impact on our fight against rare diseases in 2013.

During the five and a half months that I trained to run 13.1 miles blindfolded, I learned more about my sister’s dark world, and myself, than I could have ever imagined. And race day, Nov. 16, is an experience I’ll never forget. No words of mine can describe what happened at the Thunder Road Half Marathon for the fight against rare diseases.

In many ways, 2013 has been the most successful year for Taylor’s Tale since my mom and I founded it with a small but determined group of volunteers in a Charlotte living room seven years ago. We connected with members of Congress and developed contacts with other key individuals. We partnered with a leading patient advocacy organization called the Global Genes Project and were adopted by a wonderful, local philanthropic organization called Playing for Others. We’ve raised more money in other years, but we’ve never extended our reach in such a big way, or had this much excitement surrounding a funded project, or harnessed the power of a great story the way we did with the run…until now.

But while 2013 has been an incredible year for Taylor’s Tale, it has been a difficult year for Taylor in every way. When we founded Taylor’s Tale, my sister was an animated, spunky, running, playing, talking, singing 8-year-old with most of her vision. But Batten disease is a demon. Taylor has a beautiful singing voice, but she can no longer talk. Her two 5K finishes inspired my blindfolded half marathon, but she can no longer walk without assistance, and her wheelchair is on order. My sister taught herself to read before kindergarten and learned Braille after she went blind, but she can’t read or write anymore. My sister can’t use a fork and spoon, because Batten disease stole her fine motor coordination. I can see the sadness in her eyes, even though her eyes can’t see me.

Batten disease has won every battle.

But it will NOT win this war.

The Greatest Race

Published: December 22, 2013 ~ 0

By Laura Edwards

Thanks to my friends at Run For Your Life, who hooked me up with a free pair of purple Saucony Triumphs and some other swag for putting together one of the biggest – and most awesome – teams at Charlotte’s Thunder Road Marathon. I also snagged a pair of limited edition, stereo-Bluetooth earphones from yurbuds.

running gear

I don’t think anyone’s ever made a shoe quite like the Brooks Glycerin (the only shoe I’ve worn in a race for three-plus years), but I’m willing to branch out in the name of purple and variety. And the earphones are just cool.

I’m already filling my race calendar for the coming year, and though I’ll never be able to match the epic journey of my blindfolded run for my sister at last month’s Thunder Road Half Marathon, I couldn’t be more excited about running for Taylor and the fight against rare diseases in 2014.

Less than a week after I kick off my sixth year of running for Taylor with the Charlotte 10 Miler, Taylor’s Tale and other organizations from more than 70 countries will recognize Rare Disease Day. On Feb. 28, 2014, the seventh annual Rare Disease Day will provide a platform for patients, patient representatives and others to raise awareness about rare diseases and the huge impact they have on patients’ lives. Since its founding in 2008, Rare Disease Day has contributed to the development of national plans and policies in many countries, including the United States. Last year, Taylor’s Tale sent two board members, including my mom, Sharon King, to Washington to attend sessions, visit with legislators and advocate on behalf of the 30 million Americans who suffer from a rare disease.

As my mom and her travel buddy, Debbie Carney, forged relationships with key decision makers and gained valuable knowledge, the rest of the Taylor’s Tale team joined with Dr. Steve Gray of the UNC Gene Therapy Center to announce co-funding for a two-year research project that, if successful, could lead to a clinical trial for children with two forms of Batten disease. Ten months later, Dr. Gray’s work is on track, and our team is focused on securing additional funding to help move the project past the first two years and toward our goal of a treatment.

My husband and I are hosting Christmas this week. This weekend, we did some December “spring cleaning” to get our house in shape for the holidays. I pulled all of my race medals down from the plastic hook on the office closet door, where I’d thrown them up in a haphazard fashion. I counted seven from 2013:

As I spread them out on the carpet, I relived each race, from a rain-soaked Charlotte 10 Miler in February to a rain-soaked Huntersville Half Marathon last weekend. I realized I set a new personal record (PR) in every race except the one I ran blindfolded. And I felt Taylor’s absence at every single one. As I sat alone on the floor and ran my fingertips over those medals, feeling the raised details of each one as a blind person would, I thought about how much my sister has declined this year.

I got faster in 2013 – a lot faster. I owe it to a good friend who ran my first race with me and helped me – a born sprinter broken by soccer – believe I could be a distance runner; to the shoes that were made for my balky ankles and feet; and to the doctor who convinced me that lower mileage and cross training might actually make me better on race day. But more than anything, I owe it to my sister, who gives me wings when my lungs burn and my body wants to quit. More than anyone else, my sister, who can no longer walk without assistance, taught me how to fly.

I have big plans for 2014, both on and off the race course. I intend to keep setting PRs. But at the end of the day, my medals are just worthless chunks of metal.

Dr. Gray and others are racing to save kids like Taylor and the millions of people fighting a rare disease.

Theirs is the greatest race of all.

The Magic Tutu

Published: December 15, 2013 ~ 2

By Laura Edwards

I don’t normally run long races back-to-back, and after pouring all of my physical and emotional energy into running Charlotte’s Thunder Road Half Marathon blindfolded for the fight against Batten disease on Nov. 16, I planned on taking some time off before starting my 2014 race calendar with a 10-miler in February. But a couple of months ago, I won a free entry to the Huntersville Half Marathon from Théoden Janes, the Charlotte Observer’s pop culture writer. The race takes place just four weeks after Thunder Road, but when I won the entry, I thought, why not? It’d be a nice cool-down; a no-pressure way to end a great year for running.

I took the no-pressure attitude to the extreme. I dropped my training mileage to the bare minimum (12 miles/week). I never looked at the course map; I didn’t know a thing about the grade/elevation, turns or, well, anything. I ate junk food the week of the race. I stayed out late for a company Christmas party on Thursday night and got less than five hours of sleep on Friday night.

And then there was the tutu.

When I approached the Taylor’s Tale cheer station located at the final turn on the Thunder Road course with my sighted guide and the gene therapy expert from UNC in November, I heard the whoops and screams of about 100 cheerleaders, including 70-plus teenagers from Playing from Others, an incredible organization that is supporting Taylor’s Tale this year. After crossing the finish line a short time later, I learned that those teens, in a spontaneous, joint burst of inspiration, took off after us in their purple tutus, t-shirts, sparkle and glitter to surround us in the finish area, like a scene from a Disney movie.

When I had lunch with some of our friends from Playing for Others a couple of weeks ago, one of them, Madison Lynch, still had her tutu in her car. In a moment of enthusiasm/insanity, I promised them all I’d wear the tutu in the Huntersville Half Marathon for Taylor.

And then there was the rain.

I watched the forecast all this past week, and it only got worse. By Friday, the forecast looked ominous: 40 degrees at the start of the race, with a 100 percent chance of rain. I told one of my friends at the office that I’d probably look – and feel – like a drowned ostrich in that tutu.

But I don’t go back on my word. So at 6:30 yesterday morning, I put on my Coldgear tights and top-of-the-line Feetures socks, a base layer shirt and Team Taylor’s Tale shirt, the 4TAYLOR sleeves given to me by my sighted guide and his wife, and a hat to keep the rain out of my eyes. Last of all, I laced up the Brooks shoes that are overdue to be replaced yet carried me to the greatest sports moment of my life at Thunder Road four weeks earlier, and pushed them through a purple tutu that is most definitely not moisture-wicking, water-repellent or aerodynamic.

That tutu wasn’t designed for running, but it was a rock star at building awareness for Batten disease. During the race, I lost count of all of the water station volunteers and spectators who yelled, “Love the tutu!” or something similar when I ran by them. “Visit taylorstale.org to learn why I’m wearing it!” I yelled back. One mother watching the race with her daughter actually nodded and started typing something into her phone almost instantaneously. It felt good to imagine – to hope – she went to our site.

Most of the course snaked through neighborhoods decorated for Christmas, a change from the Thunder Road course that starts and finishes in center city Charlotte. It drizzled for most of the 13.1 miles, and for a short period, the rain poured from the front brim of my hat. But my legs felt strong, and I powered through the rolling hills. I got an extra burst of energy when I passed the 1:50 pace group and realized I didn’t feel winded at all (my personal record, or PR, for the half was 1:57).

Even with the rain, the end came too quickly. When I approached the 13-mile marker, I kicked it into high gear for my customary sprint to the finish line. I wish someone had a video of me sprinting to the finish in that tutu! And when I ran across the timing mats, the clock read 1:47:30:73. I’d beaten my previous PR by 10 minutes. In the rain. On junk food. On no sleep. On a course I didn’t know anything about. In a tutu.

I didn’t think the tutu would survive the day, but it’s not going anywhere. It will forever be known as the magic tutu. Because I’m one of those people who refuses to throw away the shoes that carried me to a great finish, even if I can stick my fingers through the soles.

I don’t know if it’s really a magic tutu. But I do know this: every time my muscles scream and my lungs burn, every time I want to walk to the top of a hill, I think about my sister; I think about how she ran the Thunder Road 5K from start to finish, and I think about how she faces the world’s worst disease with courage and grace. I think about those things, and the pain in my legs melts away, and my lungs fill with air, and I feel as if I could sprint to the top of the world’s steepest hill.

I know that yesterday, I ran a half marathon 44 minutes faster than I ran my first half marathon in 2009, and that I’ve gotten faster each year. I also know that as I’ve gotten faster on the wings of my sister’s courage, my sister has gotten sicker. I know that I will never, ever stop running for her. I know that I must never stop fighting until we cross the ultimate finish line for kids like Taylor.

The Beacon

Published: November 26, 2013 ~ 2

By Laura Edwards

A cold rain is falling from a black sky. The slick roads are plastered with wet leaves that burned with the fiery crimson, yellow and orange of a North Carolina autumn for just a short while before an angry wind whisked them from their branches.

I’m not ready for winter, but it’s here, ugly and mad.

One cold, bright day last winter, I told my mom I needed to quit Taylor’s Tale for awhile. Remembering that moment now, I don’t know what I meant, and I’m not sure I ever really did. I uttered those words in the middle of a journey around an indoor track with no shortage of directional signs. But I’d still lost my way.

I never quit Taylor’s Tale, after all. Mom gave me an out, but I didn’t take it. Instead, I picked up my boxing gloves and threw myself back into the ring. I kept writing, and I kept fighting.

Capitol building

I thought Batten disease was killing me, but I was wrong. It’s killing my sister. And I can’t let it get away without a fight.

I stuck around, and since that day on the track, I’ve watched Taylor’s Tale partner with other non-profit organizations to help develop a possible treatment at the UNC Gene Therapy Center, endorse important legislation for the millions of Americans fighting a rare disease, speak to members of Congress and a regulatory committee of the National Institutes of Health (NIH), and tell stories that have reached the far corners of the globe.

Since that day on the track, we’ve earned a lot of victories, but Batten disease has kept winning, too. Last weekend, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor Taylor, who ran the Thunder Road 5K after losing her vision in 2008, and support the fight against Batten disease and other rare diseases. From the moment I decided to run the race blind, I dreamed of wrapping Taylor in a hug at the finish line. But my sister was in no condition to join us on the morning of the event. Thunder Road marked one of the most incredible experiences of my life, and I’ll never forget it. But hanging my medal around her neck at my house hours later and seeing her face light up was just as special.

In two days, I’ll see Taylor again for the Thanksgiving holiday. Batten disease has a powerful effect on a family; if you’re not careful, it can take everything that’s good in your life and rip it into little pieces. It’s the world’s worst diseases all rolled into one, and it’s been busy with my sister in 2013.

And yet…

I’m thankful.

I’m thankful for my time with my sister, whether it lasts 15 or 50 years. I can’t change the fact that my sister has Batten disease. I can hope that tomorrow won’t come, but I know it will, like the rush of water behind a dam that’s about to burst, or the licking flames of a fire that has already started to spread. And yet, I can recognize the beauty in her smile, the courage in her laugh and the warmth in her hug. I can accept each new day we’re given with Taylor as a day some people aren’t blessed enough to have with the people they love. I can feel encouraged by all of the progress that has been made because my sister’s story is powerful and people are good.

On my dark days, I can feel angry at Batten disease and know it’s okay to hate something that’s stealing somebody I love. I can channel that energy into saving lives. In that way, I’m thankful for the anger, too. My anger is always conquered by my love. And my love for Taylor is a bright beacon, lighting my way.

What are you thankful for?

Some Place I Can’t Describe

Published: November 18, 2013 ~ 24

By Laura Edwards

After months of training, planning and anticipation, it arrived: Charlotte’s Thunder Road Marathon, and my planned attempt to run 13.1 miles blindfolded to honor my little sister, Taylor, and support the fight against Batten disease.

On Friday, my colleagues at a creative marketing communications agency threw a purple-drenched pep rally, complete with the theme song from “Rocky,” a gift to Taylor’s Tale and an appearance by my husband, John (who schemed with them to plan the surprise).

At the race expo, I traded hugs with my former colleagues at the healthcare organization sponsoring the race and runners wearing purple for Taylor’s Tale on race day.

Friday night, Dr. Steve Gray, a UNC Gene Therapy Center expert whose lab’s Batten disease research is co-funded by Taylor’s Tale, arrived in Charlotte for the race.

Finally, race day arrived. John, Steve, my mom and I picked up Andrew Swistak, my sighted guide, and arrived in uptown Charlotte before sunrise. I did an interview with News 14 Carolina and took a couple of photos for Society Magazine.

Andrew, Steve and I headed to the start line just as the morning’s first sunlight painted the tops of the skyscrapers. And at 7:15, I took one end of a green bungee cord, pulled down the blindfold bearing my sister’s name and ran into darkness.

We got off to a slow start for the first few miles due to the policeman driving the pace car and charged with keeping the early starters at bay. We even took a wrong turn at one point when the pace car couldn’t keep up with us and had to wait at a busy intersection for the light to change before we could cross. But Andrew and Steve took it all in stride; a few miles in, the course opened up for us, and we picked up the pace.

Auditory cues mean so much more, and are so much more acute, when you can’t see. I loved hearing the reactions of people lining the streets to cheer on runners. First, they cheered for us as they’d cheer for any runner they didn’t know. Then, they’d notice something different about us and go silent before crescendoing into a loud roar. It was incredible to experience, and it gave me an extra kick. Several times along the course, we passed people who knew me or knew our story. I didn’t recognize all of them, but along one quiet neighborhood street, my good friend, Amy, surprised us. I recognized her voice as soon as she called my name. So much of human emotion is expressed in the eyes, and a thick blindfold concealed mine, but I hope she knew how much it meant to me to hear a familiar voice at that very moment.

A few weeks ago, during my longest blindfolded training run with Andrew, I ran untethered for a short period. During the race on Saturday, Andrew cut me loose a few times. Around mile 10, I ran without my guide for what felt like an eternity. I never felt closer to Taylor than during that stretch. I imagined her next to me, healthy, her legs in sync with mine, her voice dancing on the wind, her eyes drinking in the earth.

Just a short time later, we approached the Taylor’s Tale cheer station near the final stretch. Once more, Andrew took the bungee, and I ran past a screaming, adoring crowd. Their voices melted the cramps in my legs and filled my heart with love. In front of the station, I made a 90-degree turn on Andrew’s spoken direction alone, and we headed to the finish line. As we did, 70 teenagers clad in purple tutus, pompoms, sparkle and glitter took off after us. And as I hurdled over the first timing mat, then the second, and Andrew pulled me to a stop, and I lifted my blindfold and let the light come pouring in, I melted in the arms of my mom, who stood waiting for me at the finish line, crying, and the kids surrounded us, closing us off from the outside world, and suddenly, even though I had a medal around my neck and a timing chip on my shoe, I wasn’t at a race any longer, and I didn’t care that I’d just run a half marathon blindfolded. I was somewhere else, some place I can’t describe or ever return to again except in my dreams.

I ran 13.1 miles in the dark, but I didn’t take a single step alone.

We built Taylor’s Tale from the ashes of a tragedy that tried to burn my family to the ground. And Batten disease is the saddest thing I’ve ever known.

But Taylor’s Tale is not a sad story. Taylor’s Tale is a story of love and hope. And as I ran the final steps of Thunder Road, flanked by living angels and guided only by Andrew’s voice and Taylor’s courage, I knew:

Batten disease may have cast a dark shadow on our world, but I was running to the light.

I believed.

And I felt free.

Note: I ran the Thunder Road Half Marathon blindfolded not only to honor Taylor’s courage and raise awareness of rare diseases, but also to support Dr. Steve Gray’s gene therapy research 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 our fight to develop treatments for Batten disease and other genetic diseases, click here.

The Finish Line

Published: November 14, 2013 ~ 4

By Laura Edwards

In less than 36 hours, I’ll cross the finish line of Charlotte’s Thunder Road Half Marathon, completing the biggest road race of my life. I’ll take off my blindfold and let the light come pouring in.

We won’t have an answer for kids like Taylor by Saturday afternoon. But I hope that my run, and the runs of all 50-plus people who will put on a purple shirt for Team Taylor’s Tale at Thunder Road, will help us get closer to the finish line in the race that really matters.

Thanks to all those who will help us turn Thunder Road purple for Taylor on race day.

Thanks to all of our supporters who will rock the cheer station at the final stretch and give ALL runners the boost they need to get to the finish.

Thanks to Dr. Steve Gray for dedicating his life to finding treatments that could save people like my sister. He has the talent and the passion to lead us into the light.

Thanks to my guide, Andrew, who helped me find my way in the dark.

Thanks to my family, who always believed in me.

Thanks to my sister, whose bravery inspires me every moment of every day.

It IS possible to find beauty in the midst of a tragedy. Focus on what’s good, appreciate the support of others, work hard, keep your eye on the finish line, and never, EVER stop believing.

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! Online registration is closed, but you can still register at the race expo on Friday, Nov. 15. Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, click here for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

The Reason

Published: November 10, 2013 ~ 4

By Laura Edwards

The Thunder Road Half Marathon is less than a week from today. When I closed my eyes and took my first steps as a blind runner on a middle school track on June 5, I only hoped that I would cross the finish line standing on Nov. 16. But now, with 15 blind runs under my belt, including a 10-mile run just seven minutes shy of my sighted personal record for that distance, I feel confident that Andrew and I will run a great race for Taylor and the millions of people fighting a rare disease.

With Thunder Road just days away, my attention has shifted away from training for the race to considering last-minute logistics, such as:

We have more than 40 people running for Taylor’s Tale, giving us one of the largest teams at Charlotte’s largest road race; somehow, we have to get purple Nike Dri-FIT shirts to our runners between Tuesday (when they come back from the printer) and Friday.
We’ve received local, statewide and even national media interest in our story; juggling interviews, especially for TV, with a full-time job can be like trying to put together a jigsaw puzzle with a couple of missing pieces.
The race begins and ends in uptown Charlotte; this morning, I squinted over my cup of decaf coffee at the parking map posted on the race website and tried to find the corner near the finish line where our cheer station will be located.

As much as I want our supporters to have convenient parking, I’m most concerned about my dad, who will be with Taylor on the morning of the race. I’ve often dreamed about what I will do when Andrew and I cross that finish line. I can’t even begin to imagine how I will feel.

I called my first post about this race “Run to the Light.” After 13.1 miles in the dark on Saturday, I’ll take off my blindfold; I hope my little sister is the first person I see. But last night, for the first time, I grew concerned about finding parking close enough to the finish line that my sister can make it there.

In the five months since Andrew and I began training for Thunder Road, Taylor has slipped deeper into the dark chasm of Batten disease. She struggles to walk, even with a walker. She suffers from myoclonic jerks. Batten disease has silenced a once beautiful singing voice. I don’t remember the last time my sister talked to me. I wish I’d known it was the last time. I would have savored it, or recorded it, or made a note of the date.

Five years ago, my sister ran her own triumphant race at Thunder Road. She ran tethered by a bungee cord to a sighted guide, just as I will do on Nov. 16. She stumbled and fell a few times, but she pulled herself to her feet, brushed herself off and said she could keep going. And she RAN across that finish line.

But that was five years ago. I know a lot about Batten disease. I may have majored in English, but I can describe the science of Batten disease in cold, technical terms. And I know this to be true:

My sister is dying.

I talked with a writer at a national magazine for a possible story yesterday morning. She asked me if I believe that this run, or the efforts of Taylor’s Tale, can save my sister.

I believe in Dr. Steve Gray, who will run alongside Andrew and me on Saturday. I believe that Steve and the team at the UNC Gene Therapy Center can save the lives of kids like Taylor. But as much as I believe in Steve and a handful of other talented scientists around the world working on Batten disease, I don’t know the answer to that writer’s question.

horseback riding

I do know this, though:

There will ALWAYS be another Taylor if we do nothing. Children and families shouldn’t have to endure a tragic disease with no known cure. And I believe we WILL beat Batten disease.

For me, Taylor’s courage as a runner will always live on as a symbol of her never-give-up attitude in her fight against Batten disease. Blindness kicked her and knocked her down when she ran that 5K at Thunder Road in 2008, but she pulled herself up and kept going. I won’t give up in MY fight on behalf of people like her until the day we cross the ultimate finish line.

Taylor didn’t stop running until her body gave out on her…and neither will I.

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 by TONIGHT at 11:59 p.m. ET. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” If you miss this online registration deadline, you can also register at the race expo on Friday, Nov. 15. Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, click here for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.