Real Magic

By Laura King Edwards

Five years ago, I spent five months learning to run without my vision, strapping on a blindfold a couple of nights a week and setting out into the dark world for two or five or nine miles with my friend and guide, Andrew Swistak. And on a chilly November morning, I crossed the finish line of a half marathon course ringed by soaring skyscrapers and cheering people and trees bursting with golden color I couldn’t see.

2013 blindfolded finish

The effort had started out partly as a publicity stunt to support Taylor’s Tale and partly as a unique way to honor my blind sister, who had run her first 5K race on the same course in 2008.  I didn’t realize that the experience – both the race itself and the training it required – would save my own life at a time when I’d nearly given up hope. Hope in the race to save my sister from Batten disease, and hope in my ability to be happy in any phase of my existence even as Taylor was dying.

Taylor's 5K finish

It was such a magical day that I was sure I couldn’t replicate it. So instead of setting a date for my next blindfolded half marathon, I set out to run a race – sighted – in all 50 states. And on the plane bound to Oregon, my first, the following August, I began writing a book.

I finished the manuscript in 10 months, but it took longer to convince a publisher of the audience for a story inspired by one child’s fight against an ultra-rare disease. That word – rare – can be the kiss of death, as so many rare disease advocates know too well. “That’s a really touching story, and Batten disease sure is sad,” says the would-be agent or publisher or donor. “But the world has so many other problems that need fixing.”

As luck or fate would have it, I did find a home for my manuscript, and after what had seemed, to me, a long and torturous journey to turn “Run to the Light” into a real book, my publisher chose the week of the 2018 Novant Health Charlotte Marathon to release it. The Charlotte Marathon, previously known as the Thunder Road Marathon, was where my sister and I had first crossed the finish line as blind runners. I knew that I had to try to recapture the magic of my 2013 race.

Meanwhile, Taylor continued to get sicker, and I wondered how much longer she’d live. When I wrote the epilogue of “Run to the Light” in January 2018, I admitted that I wasn’t sure she’d survive till the book’s publication. And throughout this year, every holiday we celebrated together became another mark on the calendar – a poignant reminder of how my sister bucked the odds.

Along the way, I faced a big life change of my own. The same week I wrote the epilogue, on an unusually snowy night in my pocket of the Carolinas, I learned I was pregnant with my first child. Still, I resolved to run 13.1 miles blindfolded for my sister in November, approximately six weeks after giving birth.

I wouldn’t have to do it alone. In addition to my friend, Andrew, who agreed to serve as my guide again, more than 100 people signed up to run or walk various race distances wearing purple for Taylor. Early on, I thought maybe we could field the biggest team at Charlotte’s biggest race event. I pulled a volunteer committee together to plan race week events and social media and PR strategies, hoping Taylor’s Tale could benefit from my sister’s amazing running story once again.

Then, the sky fell. Right after Labor Day, Taylor was admitted to the hospital with intractable seizures. For the next three weeks, she clung to life with the same spunk I’d seen since she was a fiery toddler who always figured out a way to win, even if her opponent had 40 inches and 100 pounds on her.

But Batten disease always comes out on top, in the end. Six days after my son Jack was born, Taylor took her last breath in an inpatient hospice unit, separated from the labor and delivery room where I’d brought a new life into the world by just a few floors.

My family, of course, could have canceled our marathon plans. We were exhausted and heartbroken, stripped bare before the trees lost their first leaves of fall.

But we didn’t. Instead, we did as Taylor would have done. And this past Saturday, Taylor’s Tale turned Charlotte purple for her. I ran the half marathon blindfolded, crossing the finish line in 2:01. I could credit training that started less than two weeks after Jack and I came home from the hospital, but I know better. No – something else willed my legs and lungs and heart to work like I hadn’t just given birth. Something else showed me the way to the end of a 13.1-mile course I couldn’t see.

Maybe it was my friend, Andrew, the perfect guide. Maybe it was the skills we’d honed in 2013, even more crucial considering we didn’t train together – at all – for this race. Maybe it was my friend, Alyson, my brother, Stephen (running his first half marathon), Steve Gray, whose gene therapy research Taylor’s Tale funded, or runners from Abeona Therapeutics, the company that licensed Steve’s work and will begin treating children like Taylor in an upcoming clinical trial. Together, this group formed sort of a bubble to protect me from falls in the stampede that took over Charlotte’s streets for a few fleeting hours on a picture-perfect fall morning.

untethered running

Maybe, above all else, it was the ghost of an angel – the same angel whose legacy outweighs any physical feat, blindfolded or not – that carried our team to the finish line on Saturday. When I took off the blindfold at the finish line, I hugged my guide and my mother and my newborn son, wrapped in a moment that felt matchless yet strangely familiar. And that’s when I knew:

This was magic.

finish line with Jack


Running the 2018 Charlotte Marathon for Taylor

By Laura King Edwards

In 2013, I put on a blindfold, summoned an ounce of my sister’s courage and ran the half marathon at Charlotte’s largest road race. When I crossed the finish line one hour and 59 minutes later, I knew I could never repeat the magic of that moment.

Mom and Laura at finish line

But I can conjure up a new kind of magic.

That’s why, on November 3, 2018, I’ll run the Novant Health Charlotte Half Marathon blindfolded one more time. I’m thrilled and humbled to get another shot at the experience that inspired my first book (hitting shelves the week of this year’s race) and 2017 TEDx talk.

I hope you’ll help me turn the city purple for Taylor, who completed her first 5K at this event 10 years ago — not long after losing her vision to Batten disease. Today is Global Running Day, making it the perfect time to begin working toward a personal goal (whether that be running your first half or full marathon, finishing your first 5K or simply getting involved in an incredible cause).

Join me at the 2018 Novant Health Charlotte Marathon and run or walk one of five distances:

  • Marathon
  • Half marathon
  • Marathon relay
  • 5K
  • Kids’ 1-mile run

 

IMPORTANT: Sign up at http://bit.ly/run4taylor. When you select your race distance, make sure your team name, ‘Taylor’s Tale,’ is selected.

If desired, you can up the ante by fundraising through your own run/walk or donating to support a friend’s effort. Donate Now

Why will you wear purple for Taylor? Share your own story with us in the coming months by using the hashtag #4taylor on social media. Give us a glimpse of your own training — the good, the bad and the ugly — or tell the world what running for Taylor means to you.

Whatever your speed — run, walk or cheer — I  hope you’ll join us for the race and other events that weekend (stay tuned for details). Happy running (or walking)!


How I Found My Second Wind in Arizona

By Laura King Edwards

Normally I preach the importance of regular updates, but I’m breaking all of my own rules lately. This year didn’t exactly get off to a rough start, but I’ve had a lot on my mind these long, cold winter days, and I’ve started and abandoned my fair share of blog posts.

I can say the same for my running. That’s why I didn’t expect to post a great time at Arizona’s Sedona Half Marathon, my 21st half marathon in my 20th state. I kicked off a new fitness program late last fall and packed on about five pounds of muscle, but since the Rehoboth Beach Half Marathon in early December, I’ve gone for a run longer than eight miles exactly once. Not a recipe for success in a hilly, 13.1-mile race at an average altitude of about 4,600 feet above sea level.

Good thing none of these races are really about speed. Specifically, I dedicated the Sedona Half Marathon to my sister and to the late Celia Betz, a beautiful little girl from Ohio whose battle with infantile Batten disease ended three years ago this January. Celia’s aunt, Cherie, lives in Sedona, and Celia suffered from the same form of Batten disease as my sister, Taylor. I couldn’t wait to run those crazy hills below Sedona’s red rock cliffs for the sweet redhead whose family continues to fight Batten disease for others.

Celia

Race day conditions couldn’t have been more perfect. Yes, it’s early February, but this is the Arizona desert, and the temperature hovered around 50 degrees when I slipped into the corral at 9 a.m. (the unusually late start was another gift – I’m often up at 4 a.m. for races). Red cliffs dotted with emerald green vegetation blazed against a cloudless azure sky.

Sedona Marathon start

I started out strong, but those hills kept coming…and coming…and coming. I walked through every aid station, and sometimes I took two cups of water. I stopped to pee three times – something I never do as a runner who obsesses over her mile splits. My inner thighs chafed so badly they almost bled, even though I ran in the lucky shorts I’ve worn for all but one warm weather race. Throughout a brutal mile-ten climb that seemed as if it would never end, I kissed the “4 Taylor” scrawled on my hands in purple marker and touched Celia’s photo, taped to the back of my race bib.

And then, suddenly, I’d left the magical Red Rock-Secret Mountain Wilderness area and returned to town, where I discovered my legs no longer hurt and my lungs filled with air and I sprinted across the finish line as the clock struck 1:58.

Sedona Marathon finish

I still don’t understand where I got that second wind, but before I reached the end of the long finish chute, I knew I’d need to summon that kind of magic for the bigger challenge ahead of me. I know 2018 won’t be an easy year for my sister or our family. I know it will be a year of change. And just like those hills in Sedona, I know I’ll need every ounce of strength I have to face it.

And every time my breath quickens and my heart clangs in my chest, I’ll think about those two simple words – 4 Taylor – and I’ll keep my head up and smile and face it, whatever “it” may be.

Note: Taylor’s Tale is funding the creation of the first Standard of Care for infantile Batten disease. Our family and Celia’s family could have benefitted significantly from such a roadmap, which should take some of the guesswork out of disease management and allow healthcare providers to offer improved quality of life for patients and their families. You can help by donating to my fundraising campaign for Taylor’s Tale. I personally fund all race travel and related expenses, so every penny raised supports the cause. Thank you! Donate Now


Chasing Goals in Montana

By Laura King Edwards

Six weeks ago, I set an ambitious goal for the Missoula Half Marathon in Montana. I’m running in all 50 states to honor my sister and support millions fighting a rare disease. And for state number 18, I wanted to run the fastest 13.1 miles of my life.

Missoula Marathon banner

The Missoula Half Marathon had the right ingredients: a flat, fast course and more comfortable summers than my Charlotte hometown. Even better, at 35 years old and almost 20 half marathons into this running thing, I was finally in the best shape of my life.

For a long time, it looked like I’d achieve my goal of a sub-1:40 half marathon, meaning I’d have to average better than a 7:38/mile pace. I nailed my speed workouts, and at the end of 90-minute long runs, I sometimes felt like going for another 90 minutes.

Then, race day arrived.

Missoula Half Marathon start

I started out well enough. For the first four miles, I stuck close to my goal pace.

Then, the wheels fell off. I never felt tired, but my legs felt like lead. Worse, they didn’t take well to the cut of the new running shorts I’d packed for the race; as a result, I had such awful chafing on my thighs that in the later miles, every step made me want to scream out in pain.

As I often do, I tried to focus on everything but my own pain and my body’s inability to follow instructions. I watched the Montana sky. I listened to the music of the man wearing a tuxedo and playing a grand piano in his front yard. I ran through every sprinkler, even though the temperature never broke 80 degrees. I thought about my sister, Taylor, and how if she wasn’t sick, she’d be there beside me, giving her best through the last .1 mile.

But my sister can’t run anymore. She can’t even walk. And my legs. Just. Wouldn’t. Go.

I did almost everything right in the weeks and days and hours leading up to the race. But running-wise, it wasn’t my day. In fact, I crossed the finish line short of my sub-1:40 goal by a full 10 minutes, well off the PR I’d set on a tougher course three years ago.

But I accomplished my other goal in Montana. I had a nice interview with Missoula’s ABC/Fox affiliate at the finish line. That followed a 15-minute radio interview and a nice story in the Missoula Current.

Missoula TV interview

I spread the word about Batten disease and maybe even inspired some people to give to Taylor’s Tale. And supporting kids like my sister means a lot more to me than my own performance.

I love you, T. You’re always with me!

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Waterlogged in Minnesota

Running Through the Valley of Fire to Fight Rare Disease


Waterlogged in Minnesota

By Laura King Edwards

When I flew to Washington, D.C., for Rare Disease Day at the end of February, I was already signed up for Nevada’s Rally in the Valley of Fire half marathon on March 31. But on my way out of D.C., I stole a few minutes with my friend, Michelle Berg, in an airport Starbucks. And before I took the last sip of my chai tea, we’d hatched a plan for me to travel to Michelle’s hometown of Minneapolis for a 15K race (9.32 miles) just two weeks after my half marathon in Nevada. After a string of injuries, I’m careful about giving my body enough time to recover between races.

Sometimes, I break my own rules.

Michelle is more than just a friend; she’s vice president of patient advocacy at Abeona Therapeutics, a clinical-stage biopharmaceutical company focused on developing treatments for rare genetic diseases, like Batten disease. In 2016, Abeona added Dr. Steve Gray’s promising gene therapy work to its pipeline, validating our belief in the project at UNC. With a clinical trial on the horizon, our dream is coming true.

On Good Friday, I flew alone to Minneapolis to run the Hot Chocolate 15K with Michelle, marking state 17 in my quest for 50. I kicked off the trip with a talk at the University of Minnesota Center for Orphan Drug Research. I landed in Minneapolis just in time to catch a ride to campus and connect my laptop. It made for a crazy morning after a crazy week at home. But having the chance to share our story with a room of difference makers made it all worth it.

University of Minnesota gene therapy talk

The weather didn’t cooperate on this trip. On race day, the radar looked like this:

Minnesota radar

I’d hoped for sunshine and a slight breeze, but it didn’t work out, and I’d come a long way. I tried to ignore the weather and went through my normal routine, writing my sister’s name on my arm and caking the soles of my blister-prone feet with Vaseline.

Michelle was recovering from an illness but braved the nasty morning to run the 5K. We huddled in her car in a parking lot half a mile from the start line until the last possible minute. We wished for a break in the clouds even as rain hammered the windshield, but the break never came. Thirty minutes before the start of the 5K, we wished each other luck, said goodbye and went our separate ways in the gloom.

At the start of the 15K, I splashed through rain puddles as warm, fat drops pelted my face and soaked through my clothes. I picked and stuck with a pace group – for the first half of the out-and-back course anyway – and hoped the puddles weren’t hiding ankle-breaking potholes.

Hot Chocolate 15K start

I’ll be honest: at times, I wanted this one to end. I hear the Hot Chocolate 15K route along the Mississippi River is beautiful, but I couldn’t tell with all that rain. My clothes felt heavy on my body and muddy water soaked through my shoes and my legs felt like lead.

But it’s impossible to quit when you’re running for someone like Taylor. And it’s easy to find the energy to push through one more mile, and another, and another, when you know your sister wouldn’t stop running, if she could still walk. After the turnaround on the out-and-back course, I realized I couldn’t keep up with my pace group any longer. But somewhere on that waterlogged course along the river’s edge, I heard my own voice, imploring my body to keep pushing forward.

When I crossed the finish line, my heart felt full, and my legs felt light, and suddenly I couldn’t get enough of that race day feeling: that feeling that through my sister’s story and courage and love, we can achieve anything we imagine. And as I picked out Michelle in the crowd of spectators and felt the medal around my neck and walked off the soreness in my legs, I thought only about Taylor and the bright future she inspired but won’t live to see.

In the event at the university on Friday, I told the room of scientists and aspiring scientists that one day, they’d have to look deep inside themselves to fix a problem. They’d have to turn their backs on logic and numbers and facts in favor of faith and heart and imagination. And at the end of my 15K in rainy Minneapolis, I thought about how imagination – not logic – drives most of the good in this fight.

I’ve finished races in 17 states. At this rate, I’ll reach my goal in six years. I don’t know if I’ll keep up the pace, or if I even care. But I know this: my crazy, incredible personal journey to fight rare disease is just beginning.

Hot Chocolate 15K finish

 

 


Running Through the Valley of Fire to Fight Rare Disease

By Laura King Edwards

Nevada marked the 16th state in my quest to run all 50 for 30 million Americans fighting a rare disease. I dedicated my latest race to the memory of Henderson’s Hannah Ostrea, who lost her life to Gaucher disease type 2/3 before she celebrated her fourth birthday. Now Hannah’s family supports other Southern Nevada families who need the kind of medical equipment and services they needed during Hannah’s life. Through their Little Miss Hannah Foundation, they took a tragedy and turned it into something good.

Today fewer than 25 people ran the first leg of Rally in the Valley of Fire, a new, three-day stage race in Nevada’s Valley of Fire State Park. Our small group of runners boarded a single bus in a quiet parking lot this morning as cool raindrops fell from the gray desert sky not long after an invisible sunrise.

If you’re picturing a typical city road race, take that image and turn it upside down in your head. I ran this course in two hours and 42 minutes – a full hour longer than my personal record for the distance. In that time I took 100 photos, stopped to pee, drank paper cups of Heed and ate oatmeal cookies at the first of just two aid stations in the backcountry. I jumped over bighorn sheep poop and prickly bushes and rocks. I ran across the Fire Wave slickrock formation and through the bottom of a sandy wash.

Valley of Fire slot canyon

Running is pure. Running is something humans have done since our earliest ancestors roamed the African plains. Running is something you can do without any teammates or fancy equipment or advanced skills.

One thing I loved about the Rally in the Valley of Fire half marathon was its purity. No fancy expo or race day frills. No sponsor banners or music blasting through speakers. No chips or mile markers. No timing mats or even an official start line. Seconds before 9 a.m., Joyce, the race director and owner of Calico Racing, told us to stand in line with the nose of the bus and get ready for her signal to go.

Fire Wave slickrock

Small orange ribbons paper-clipped to cacti and scrubby plants and brilliant flowers bursting in the desert landscape marked our path. And at the end, runners feasted on a lunch spread with deli sandwiches and chips and granola bars and cookies and frozen chocolate milk, all prepared in a big rental truck parked at the finish line. We sat in plastic patio chairs and rested our muscles and shared stories and watched the sky turn from gray to blue over the sweeping valley.

I was in constant awe of the course’s indescribable beauty. I ran four paved miles, but much of the remaining nine miles and change took me away from manmade roads and established footpaths, instead following well-worn game trails.

Valley of Fire sandy wash

Experiencing places like Nevada’s Valley of Fire State Park always makes me grateful that I have the ability to see. Even after Batten disease stole my sister’s vision, she experienced places I visited through my stories. But now she can’t communicate any longer. While I still talk to Taylor, she can’t talk to me, and I’d give anything to know what she’s thinking.

I have a long way to go before I can say I’ve run a race in all 50 states, but the best part of this long journey is that we’ll be treating kids in a gene therapy clinical trial before I finish. Taylor’s story had a lot to do with making that possible. My sister might have lost her legs to Batten disease, but she never lost her courage.

That’s why I’ll never quit running or fighting for Taylor, Hannah and millions of people like them.


Running Toward Everything

By Laura King Edwards

I’m traveling for races so much these days, it isn’t often that I have a chance to run in my North Carolina hometown. So I looked forward to running in today’s Charlotte 10 Miler, where I figured to see familiar faces and log a fast time on a familiar course.

But life happened, as it tends to do. I lost my father-in-law on Election Day and moved into a new house on New Year’s Eve. I dove into Taylor’s Tale with a sort of conviction I struggled to muster in the past several years. I stayed busy at the office. Needless to say, my feet haven’t seen much action on these fleeting winter days.

But I had a lot of things to fuel me along the 10-mile course on sleepy neighborhood streets and wooden walkways and tree-lined trails winding through urban wetlands. The Batten disease community lost six children in the past few weeks. My own sister’s stubborn star is fading. And as the morning sun lit up the sky in shades of coral and salmon and goldenrod, I inked not one, but two names, on my arm.

Charlotte sunrise

The first was Taylor’s. I’ve been running races for a purpose since I took my first steps at Chapel Hill’s Tar Heel 10 Miler on a spring day in 2009, four months after my blind sister crossed the finish line of her first 5K with her face turned toward heaven.

Charlotte 10 Miler for Taylor

The second was Bridget’s. Twelve-year-old Bridget Kennicott gained her angel wings on February 15 after a brave battle against late infantile Batten disease. I’ll never forget the first time I met Bridget and her family at a Batten Disease Support and Research Association conference in Chicago. Bridget’s dad, Dave, sat behind me at a research session in one of the hotel’s chilly conference rooms. Bridget looked like a sleeping angel in the stroller beside him. When I twisted in my chair to say hello, she took hold of my finger and didn’t let go.

Something my sister used to do.

 

Charlotte 10 Miler for Bridget

A lot happened in the months leading up to the Charlotte 10 Miler. But in this, my first race of 2017, I didn’t think much about the past. Instead, as I weaved through colorful flashes of wicking shirts and race bibs and compression socks on the course this morning, I mostly thought about what I was running toward. 

7:51/mile splits. The finish line. The 35-39 age group (my birthday is in 10 days). My next race, in state 16 of 50. Exciting next steps as an author. A trip to D.C. for rare disease meetings on Capitol Hill. A gene therapy clinical trial for children with Batten disease. My sister’s tempered laugh. An evanescent smile. A radiant soul. One brilliant future realized; another extinguished.

Running toward everything.


Running for Taylor in 50 States: Utah

By Laura King Edwards

I waited a long time to run for my sister, Taylor, in Utah: two years, or the amount of time since my most recent trip to one of the most beautiful places on our planet.

The last time I visited Utah with my husband, John, for eight days of hiking in Arches, Canyonlands and Capitol Reef National Parks, I was two states into a 50-state running journey. I’d never heard of posterior tibialis tendonitis or suffered a stress fracture. My sister was still walking.

continue reading →


Running for Taylor in 50 States: New Hampshire

By Laura King Edwards

New Hampshire was special.

Heather and Chris Dainiak established the Our Promise to Nicholas Foundation in 2009, not long after Nicholas, the older of their two sons, was diagnosed with late infantile Batten disease. Heather and Chris promised Nicholas they would work tirelessly to find a cure for the monster stealing his sight and motor coordination and wracking his body with seizures.  continue reading →