Jasper’s Legacy

Published: July 5, 2016 ~ 2

By Laura King Edwards

Early this morning, I learned of the death of Jasper Duinstra in the Netherlands. When I saw the news on Facebook, my eyes misted and my legs went numb and my heart caught in my throat. But I’m supposed to be strong, so I wiped my eyes and shook out my legs and swallowed the knot, and I stood up at my desk and walked to a meeting.

Jasper’s family is Dutch but briefly lived in the U.S., where they formed fast friendships with other families fighting Batten disease. Jasper’s parents, Bou and Pip, believed in approaching the challenges of Batten disease in the same spirit as their young son’s approach to life – a spirit of enthusiasm and commitment. They established a fund, Jasper Against Batten, to support potentially lifesaving research. continue reading →

Counting Batten Disease in Years

Published: July 25, 2015 ~ 5

By Laura Edwards

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis – mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do. continue reading →

Gene Therapy Trial Paves a Path for Other Diseases

Published: June 25, 2015 ~ 0

By Laura Edwards

Today, UNC Health Care announced an innovative, gene transfer-based treatment approach for children with giant axonal neuropathy (GAN). The treatment, developed by researchers led by Steven J. Gray, PhD, is the first of its kind. A clinical trial is now underway at the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH).

This is significant news for Taylor’s Tale and the Batten disease community because we’re funding Dr. Gray’s work on infantile Batten disease – work modeled after the GAN research that is now treating children at the NIH. continue reading →

Gene Therapy and a Birthday Party

Published: June 20, 2015 ~ 4

By Laura Edwards

Every time I visit Steve Gray and the University of North Carolina Gene Therapy Center, I want to run home and immediately write a blog post and email all of my media contacts and friends in the rare disease community and tell them what’s happening in a lab two hours from my hometown. I want to tell them Steve and his team are going to change the world.

But when I get home, I can’t find the right words, and instead I just scroll through my pictures and reread my notes and wonder how I can possibly feel so inspired knowing we’re too late to save my little sister. continue reading →

The Launch of a Trial, and the Light at the End of the Tunnel

Published: February 15, 2015 ~ 0

By Laura Edwards

Nearly five years ago, when my sister could still sing and talk and walk and eat ice cream cones on hot summer days, my mother met Steve Gray, a young investigator from the University of North Carolina Gene Therapy Center, at a conference in Bethesda. Since 2008 he’d been working on giant axonal neuropathy (GAN), an ultra-rare, fatal childhood disease that causes progressive nerve death.

A few months later, we drove to Greensboro to have dinner with him. We weren’t ready to take the leap then, but Mom believed in Steve since the first time she heard him speak about his effort to save children from a monster that turned them into quadriplegics unable to eat or breathe on their own. When I sat across from Steve in our booth that night, I believed in him, too. continue reading →

Confessions from Laurel Hill

Published: April 26, 2014 ~ 5

By Laura Edwards

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

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

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

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

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

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

I hate Batten disease.

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

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

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

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

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

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

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

And I still believed.

What’s Next?

Published: March 16, 2014 ~ 4

By Laura Edwards

I (almost) never buy race photos. They catch me at my worst moments. When I look at the proofs, I think, “When did I make THAT face?”

But I not only bought this one-I blew it up to 16″ x 20″ and paid to have it matted and framed. It captured a moment I’ll never forget and tells a story in a way no words ever could.

I’m blindfolded, but I’m not tethered to Andrew Swistak, my friend and guide. He’s finishing his own race, but he’s also watching the ground to make sure I don’t fall.

Steve Gray, my friend whose work at the UNC Gene Therapy Center could lead to a better future for kids like my sister, is tailing us and snapping another photo I’ll treasure forever.

And, best of all: can you find the crowd of purple-clad teens running down the 5k side on the left? They’re not racing-they’re chasing us. When I removed my blindfold after two hours in the dark and melted into my mom’s arms, they surrounded us in the finish area.

We had our Hollywood ending to five months of a lot of hard work and one dream – a big dream in its own right that, at the end of the day, is just another chapter of a long story in our very personal fight against Batten disease and the bigger fight for 350 million people suffering from a rare disease.

It would have been perfect if only my little sister had been well enough to come to the race that morning to share it with us. Just as the finish line picture tells a story, her absence from the hundreds of photos taken at Charlotte’s Thunder Road Marathon tells another story of the cruel reality of a disease with no known cure; a disease that marches on in a body that doesn’t have the tools to fight it, no matter how strong or brave the soul inside may be.

Today, a friend asked me if I think I’ll ever run Thunder Road, or any race, blindfolded again. Without hesitating, I said no. It’s not that I dread the thought of it or doubt my ability to do it, the willingness of Andrew or someone else to guide me or even the potential of a second run to have a positive impact. It’s none of those things.

I can’t explain it, but there was something magical about what happened at Thunder Road on November 16, 2013. I felt it when I ran beneath the canopy of trees on Charlotte’s Queens Road West, untethered yet never so sure of my surroundings. I felt it when we approached the corner crammed with Taylor’s Tale supporters less than a quarter of a mile from the end. I felt it as Andrew and I approached the finish line on the final stretch. I’d never felt that way in my life, and I’ll never get that feeling from a race again. But for as long as I live, I know that I’ll only have to remember those moments, and I’ll be transported back to the day my little sister, blind and suffering from a fatal disease, gave me the courage to run 13.1 miles in the dark.

There won’t be another experience like Thunder Road. But I’m not done fighting this fight, in running shoes or otherwise. Far from it.

Do you have an idea for my next chapter in the fight against rare disease? Let me know in the comments. Meanwhile, I’m gearing up for next weekend’s Charlotte 10 Miler (rescheduled after flooding on the greenway in February), my first race of 2014. I won’t be in a blindfold, but I’ll be dressed in purple for Taylor.

Running for Taylor: Guest Post for Deb Runs

Published: December 11, 2013 ~ 2

By Laura Edwards

In August, I connected with Debbie at Deb Runs. A wife, mom, runner and personal trainer, she leads a running group called the Cruisers. Her posts are entertaining and inspiring! If you have a chance, please check out Debbie’s blog.

My sister’s story had an impact on Debbie, and she wrote about our journey on her blog after going on a 6.2-mile run in honor of Taylor’s 15th birthday. She followed my training for the Thunder Road Half Marathon, and earlier this fall, she asked if I’d be interested in writing a guest post for her blog after the race. Of course, I said yes! Following is the post I wrote that Debbie published on her blog earlier today.

In 2006, my then 7-year-old sister, Taylor, was diagnosed with a rare, brain-based disorder called Batten disease. Over time, kids with Batten disease lose their vision, cognitive skills, speech and other basic functions, like swallowing and walking. There is no known cure or effective treatment, and the disease is always fatal.

Two years after Taylor’s diagnosis, my sister, already blind and suffering from other effects of Batten disease, signed up for Girls on the Run at her school. An older student named Mary-Kate served as her sighted guide. Mary-Kate and Taylor each held one end of a jump rope so that Taylor could run like the other girls.

Taylor, Mary-Kate and their Girls on the Run team ran their first real 5K at Charlotte’s Thunder Road Marathon on a frosty day near the end of 2008. Mary-Kate told us Taylor stumbled and fell a few times, but each time, she pulled herself up and insisted on finishing the race. The pair reached the finish line in just under an hour.

To this day, watching my blind sister cross the finish line at Thunder Road remains one of the most moving things I’ve ever witnessed. I played soccer for 20 years and always ran to stay in shape. But running took on a new meaning for me that day at Thunder Road, and that following spring, I started running races for Taylor. I ran my very first half marathon at Thunder Road, at the site of her incredible feat, in late 2009.

It’s been nearly five years since I watched my sister and Mary-Kate cross the finish line at Thunder Road, and though my sister remains as brave as ever, she’s no longer able to run. To honor her courage on the racecourse and support Taylor’s Tale, the non-profit organization I co-founded, I decided to run the Thunder Road Half Marathon blindfolded.

The race was scheduled for Nov. 16. On June 5 – National Running Day – I laced up my Brooks shoes and jogged to the home of Andrew Swistak, my friend and sighted guide for Thunder Road and a staff member at the school Taylor attended during that magical time with Girls on the Run. I experienced dizziness for my first few minutes as a blind runner, and I sprained my ankle when I got cocky and tried jumping a curb. But I didn’t fall, and by the end of the run, I knew we could cross the finish line on race day, just as Taylor did.

In total, Andrew and I trained together less than 20 times over a five-month span. I also cut down on my mileage in general, knowing that finishing the race and supporting the fight against Batten disease– not finishing with a great time – were our primary goals. Along the way, we managed to pick up extensive media coverage for our cause, including multiple TV stories, local print stories, online coverage and the cover story of a statewide magazine.

Finally, race day arrived. I headed uptown with Andrew and Dr. Steve Gray, the University of North Carolina gene therapy expert whose research Taylor’s Tale is co-funding; Steve would run the half marathon with us. My mom, president of Taylor’s Tale, and my husband, John, rode along; they’d run the 5K and help Taylor’s Tale have one of the largest teams at Charlotte’s largest road race, with 57 official members and a huge cheering station at the race’s final turn.

Just before the race began, I did one final TV interview and took a few pictures for another magazine. Then, we were off! We started with the early starters group, 30 minutes ahead of the official start, for safety reasons. The pace car forced us to run more slowly than we would have liked, so we lost time over the first two miles. After what felt like an eternity, he cut us loose, and we found our stride.

For most of the race, I ran “tethered” to Andrew by a two-foot bungee cord for safety. But at times, when he felt that it was safe to do so, he took the cord and allowed me to run untethered. At one point, we ran down the center of one of Charlotte’s most beautiful streets, a four-lane road covered by a canopy of huge, old trees and lined with stately homes. I ran untethered for what felt like ages, and during that stretch, I felt as if Taylor was with me, lighting my way.

Despite our slow start, the end came in less than two hours – almost too soon. As we approached the Taylor’s Tale cheering station at the race’s final turn, Andrew again took the bungee cord, and I made a 90-degree turn on his verbal direction alone. Close to 100 people clad in Taylor’s Tale purple and glitter, including 70 teenagers from a wonderful partner organization called Playing for Others, chanted my name as we ran past the station. And as we made for the last stretch and I reached for that last burst of energy, I knew I wanted to cross the finish line untethered.

There were no other runners around Andrew, Steve and me as we approached the finish line – something I didn’t learn until later, when I saw Steve’s photos. And during that last stretch, time stood still. When we got close to the timing mats, I picked up speed; I always sprint to the finish line in my races. And amidst the cheering, I heard Andrew yell, “Jump!” and then, “Jump!” for the second mat. And then, at 1:59:58, he pulled me to a stop, and I lifted the blindfold, and the soft light of the overcast day came pouring in, and I saw my mom and melted into her, both of us crying. I don’t know how long we stood there in that position, but when I opened my eyes, I realized we were engulfed by those 70 teenagers from our cheering station; they’d taken off after us when we made our final turn and surrounded us in the finish area. It looked like a scene from the end of a Disney movie, and I half expected them to carry us out of there.

Photo credit: Well-Run Media+Marketing, LLC

As the world and reality came rushing back to me, it hit me that the only thing missing from the finish line was my sister. Taylor – my reason for running – wasn’t well enough to come to the race. But even if she could have made it, she’s blind, so she wouldn’t have been able to see how we turned Charlotte into a sea of purple and love for her.

Team Taylor’s Tale helped make this year’s Thunder Road race a day that will have an incredible impact on the fight against Batten disease and other rare and genetic diseases, and it will forever live on in our hearts. We haven’t crossed the ultimate finish line yet, because we don’t have an answer for kids like my sister. But I believe we can write the happy ending to Taylor’s Tale, and I’ll never stop running – or fighting – until we do.

You can donate to help save kids like Taylor here. Taylor’s Tale is a 501(c)3 non-profit organization, and all gifts are 100 percent tax-deductible. Our website makes it easy to give and provides other ways you can get involved in the fight against rare and genetic diseases.

Stay in touch and spread the word by liking us on Facebook, following us on Twitter and Pinterest and following my blog. Learn more about Taylor’s Tale at http://www.taylorstale.org.

Questions:

Have you ever tried to close your eyes briefly while walking or running outside to experience the sounds and smells around you?

Do you have any questions about Taylor’s Tale or Batten disease?

Do you know anyone fighting a rare disease (rare diseases affect one in 10 Americans!)?