How Taylor Inspired Me to Become a Child Life Specialist

Published: June 2, 2018 ~ 0

By Nicole McEwen

I’m a recent graduate of the University of Georgia, and I’m excited to intern for Taylor’s Tale this summer. But why am I working for this incredible organization?

For starters, I’ve known Taylor’s incredible family for about five years (I know, I’m quite lucky!). We met through a Charlotte non-profit organization called Playing for Others (PFO). PFO encourages teens to ask themselves two questions: “Who am I, and how will I give of that?” As a member, I explored and developed my own leadership skills through the arts.

But the buddy program, where teens get paired with a person with a disability, was my favorite part of PFO. During my senior year of high school, I had the honor and pleasure of being paired with Taylor.

Throughout that year, I spent time with Taylor and her immediate family. I was amazed that each of them was so strong, driven and passionate. I had never met a group so willing to be courageous and so unwilling to take “no” for an answer. And, I knew I wanted to keep them in my life well after the buddy program ended.

When I was researching colleges, Mrs. King asked me what I wanted to study. I had always liked working with kids, and my three years in PFO showed me that I enjoyed working with people with disabilities as well. However, I didn’t like working with big groups of kids at the same time (ruling out teaching), and I didn’t want to be in charge of kids’ lives (ruling out careers in the medical profession). Mrs. King mentioned that their family worked closely with people called Child Life Specialists whenever Taylor was hospitalized. I had never heard of a Child Life Specialist, so I went home and pulled out my computer to put a Google on it.

Child Life has many parts, and the job changes by day and even depending on the specific floor where you work. But in general, Child Life Specialists (CLS) take care of the psychosocial needs of children and their families during a stressful time. They:

Create a sense of normalcy by providing familiar things to do to make the setting less stressful
Provide support during medical procedures
Guide therapeutic interventions to help children and families cope
Provide education in a developmentally appropriate way to help give patients and families control over their situation

Child Life? It seemed like everything I’d ever wanted. It would allow me to support children of all ability levels and their families in difficult situations and teach them about their disease or procedure. Most of all, it would allow me to play with kids and have fun doing it.

I chose the University of Georgia because they offer a program that sends four students to the Children’s Hospital of Georgia in Augusta during their senior year to intern as Child Life Specialists. The program gives these four students about three times the amount of clinical hours necessary for certification.

Luckily, I was accepted into the program and completed it this year, graduating in May. Along the way, I got to practice Child Life on six different hospital units. I saw and learned a lot about how hospitalization and different illnesses or diseases affect a child and their family system.

I also decided to apply for an online master’s degree in nonprofit management. I have always loved the non-profit mission and figured that if I ever get tired of hospital life, working in the non-profit setting would be a good way to continue working with my target population. Plus, some of the skills I’ll gain, such as management and grant writing, could help me in the Child Life world. I will start the online program through Northeastern University this fall.

In August, I will sit for my Child Life certification exam, after which I can begin working full-time as a Child Life Specialist. That means I’ll spend much of my summer studying.

But I wanted to do something meaningful with the rest of my time at home in Charlotte, and I’m so glad Taylor’s Tale invited me to become part of the team. This internship will be a great way for me to:

Give back to Taylor’s family for putting me on my life path that I love so much
Expand my nonprofit skills and knowledge before starting my master’s degree work
Continue to advocate for children and families, even if I’m not at their hospital bedside

The official start of summer is still weeks away, yet I’ve already jumped into many different pieces of Taylor’s Tale and the rare disease advocacy world. I look forward to being part of this amazing organization and population of humans. This may be my first post, but it certainly won’t be my last, and I hope you enjoy my perspective on the things I experience this summer.

Running for Taylor in 50 States: Georgia

Published: October 26, 2015 ~ 0

By Laura King Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

I signed up for the Athens Half Marathon a few days after returning to the mainland from Hawaii, where I ran the Kauai Half Marathon on Labor Day weekend. Just 200 miles from my home in Charlotte, the quaint college town with respectable media opportunities but without the commotion of Atlanta seemed like the perfect place to notch state number nine.

But that’s not why I chose it. continue reading →

National Running Day 2015: Looking Back, and Ahead

Published: June 3, 2015 ~ 0

By Laura Edwards

Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.

That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. continue reading →

Thunder Road 2014: The Magic and the Wonder

Published: November 16, 2014 ~ 4

By Laura Edwards

I spent months training and long hours planning for the Thunder Road Half Marathon last year. Running the 13.1-mile race blindfolded, tethered for most of the way to my friend Andrew Swistak, gained national attention for Taylor’s Tale and our fight against Batten disease, and it gave me the experience of a lifetime. When the dream ended, I said it could never be repeated.

But it didn’t seem right to treat the 2014 edition of Thunder Road like just another race on the race calendar, especially after our friends at the teen service organization Playing for Others asked our permission to walk the Thunder Road 5K blindfolded to honor Taylor and our cause.

One week before race day, I came up with a crazy plan: run the last leg of the 2014 Thunder Road Half Marathon blindfolded – and untethered. Never mind that:

I’d run blindfolded just once since the 2013 Thunder Road Half Marathon (an unofficial 5K with Andrew to commemorate National Running Day in June).
I wouldn’t get an early start this year (thus putting me right in the crush of thousands of other runners).
Andrew’s sidelined with a foot injury, meaning I’d need to find another guide on short notice.

But I’ve been stubborn since I was a kid, and once I get an idea in my head, I’m tough to shake. My husband John says I always up the ante, and he wouldn’t be surprised to see me run a marathon blindfolded while juggling chainsaws if I thought it’d help our cause.

I don’t know to juggle, but I’d run blind and untethered for short stretches before. So one week before race day, I put out a call for runners aiming to run the half marathon somewhere around my goal pace. Even though I planned to run the final stretch untethered, I needed someone to help me avoid obstacles, from sewer caps and curbs to other runners. Almost immediately, my friend Alyson Vaughan responded, and I had a guide.

By the Tuesday prior to race day, I had the ear of WSOC-TV, Charlotte’s ABC affiliate and the top local station. We filmed a story about Playing for Others’ effort and my crazy plan for the end of the race with anchor Natalie Pasquarella Wednesday afternoon; while we ran/walked in the sunshine at Charlotte’s Freedom Park, Taylor had her second surgery of 2014 at Levine Children’s Hospital. As Playing for Others teen member Anna Harden guided me around the pond, I thought about how Anna and Taylor are about the same age, and I wondered if they’d be in the same circles of friends if my sister wasn’t sick. Batten disease has stolen so much.

The WSOC story aired Friday; see it here. All day, Alyson and I traded emails and texts about everything from purple shirts to parking plans. We didn’t have time to practice together.

On Saturday morning – race day – Mom pulled into my driveway a few minutes before 6 a.m. She’d signed up for her second 5K, and she looked fabulous in her purple running gear. But her phone rang the moment she walked through my back door. Taylor had just had a big seizure, Dad said. And just like that, Mom’s Thunder Road experience was over. “I hate Batten disease,” I said to John as my mother’s car pulled away.

It was 22 degrees when John and I arrived uptown, and I tried to keep my teeth from chattering as I did an interview with Charlotte’s NBC affiliate by the finish line (watch the story here). When Alyson arrived, we had our first and only “practice session.” I pulled the blindfold over my eyes, and we ran up and down the park milling with people in front of the baseball stadium as Alyson gave me verbal direction. We only bumped shoulders once. Then, it was go time.

I’ve been banged up since I ran the Great Smoky Mountains Half Marathon nearly two months ago, and I didn’t train for Thunder Road. But we lined up with the 1:45 pace group led by the Charlotte Observer’s Théoden Janes and hoped for the best.

Nine miles later, we were still on pace. That’s when my legs got angry. My calves were so tight I thought my muscles might pop. But when my eye caught the photo of Taylor finishing the 2008 Thunder Road 5K slipped inside my armband, the pain melted away.

About 1.25 miles short of the end, we made the final turn onto S. Mint Street, a not-quite-straight road in the heart of Charlotte. I’d been running to Alyson’s left for much of the race, but when we reached Mint, I switched to her right, because I’d always run to Andrew’s right. I slipped the blindfold down over my eyes, and we headed for the finish line.

We bumped shoulders a few times, but Alyson was a pro. She helped me avoid the curb and kept me on course when the road twisted and turned. In the background, someone shouted my name; I waved and pushed ahead (I learned later that the voice belonged to my friend Sharon).

Somewhere near the end – I don’t know exactly where – we passed the Playing for Others cheer station on our right. Alyson told me we were approaching a sea of purple, but she didn’t need to say a word; I could hear the cheers and knew it had to be them.

When I ran the 2013 race, I ran the last leg with almost no one around us, because we’d gotten a 30-minute head start on the rest of the field for safety reasons. But this time, Alyson and I were running in a pack for most of the 13.1-mile race, including the final 1.25-mile leg I ran blindfolded. In a crowded finish line area, the logical thing to do would have been to slow down or even walk.

But running that last stretch, I could only think of two things: my blind sister running across the finish line of the 2008 Thunder Road 5K, and the feeling I had when I hurdled the timing mats last year and landed in my mom’s arms. The final words from Playing for Others member Anna Kilguss’ poem, words that graced the backs of the team’s shirts for yesterday’s 5K, echoed in my head: “You believe. We watch. She flies.”

And then, we were in the finish chute, and instead of slowing to a jog or walking, I was sprinting in the darkness (like I’d always known deep down that I would), and Alyson was yelling “Jump!” and “Jump!” again as I hurdled the timing mats. The last thing I remember before getting my medal is Alyson yelling “Stop!”

Tears welled up in my eyes as I simultaneously hugged my friend, received my medal, realized we’d both set new personal records for the half marathon (1:44:37) and caught a sea of purple and love in the corner of my eye – the Playing for Others crew.

But I didn’t cry. Instead, I lost myself in the magic and the wonder of the moment – the great beauty that can be found in even the worst tragedies if you only believe. And hours later, when I hung my eighth half marathon medal around my sister’s neck, wrapped my arms around her thin body and breathed in her courage, I soared.

Please help me write the happy ending to Taylor’s Tale. To support our fight to develop treatments for Batten disease and other rare and genetic diseases, click here.

Thunder Road: The Skinny

Published: November 13, 2014 ~ 0

By Laura Edwards

The 2014 edition of Charlotte’s biggest race is less than 48 hours away. I think I’m ready for my second half marathon of the fall season (if not the bitter cold – the temperature for the starting gun is expected to be 27 degrees).

You can’t bottle the kind of magic that happened on the course at Charlotte’s Thunder Road Marathon in 2013. Every moment, from the magazine cover two weeks before race day to the heart-racing start to the storybook finish and the Runner’s World column the following spring, exceeded my expectations. The moment I put my medal around my laughing sister’s neck hours later – in the quiet and privacy of my own home – may have been the best moment of all.

But the 2014 race will have its own brand of magic. Our friends at Playing for Others bring a passionate, loving, infectious energy to the fight against rare disease, and you can’t bottle that either. I know they’ll write an unforgettable chapter when they step onto the Thunder Road 5K course with blindfolds and tethers and walk 3.1 miles in the darkness in honor of millions like Taylor.

My mom, too, will be an angel for Taylor this Saturday when she runs her second 5k. She’ll be joined by others running in purple for the girl who refused to let Batten disease get in her way – until it did.

As for me? I’m running 13.1 miles at Thunder Road, but I’m saving my best for the final stretch.

That’s when I’ll trade light for darkness one more time and follow my sister’s footsteps home.

Want to support Taylor’s Tale and Playing for Others at Charlotte’s Thunder Road Marathon race events this Saturday? Here’s the skinny:

The half marathon starts at 7:45; I expect to finish between 9:30 and 9:40.
The 5K starts at 8:15; the Playing for Others crew could finish as early as 8:45.
Playing for Others is hosting an official cheer station at the corner of Graham and Stonewall (mile 13 of the full marathon course). If you want to find a pro-Taylor’s Tale crowd during the race, this is your spot!
All races finish on S. Mint Street behind BB&T Ballpark.
Find course maps here.
Find other race information here.
p.s. if you live in the Charlotte metro area, watch a feature story about our 2014 effort on WSOC Ch. 9 at 5:30 p.m. Friday.

Charlotte’s Thunder Road Half Marathon: The Next Chapter

Published: November 9, 2014 ~ 5

By Laura Edwards

We’re approaching the first anniversary of the 2013 Thunder Road Half Marathon, where the story of Taylor’s courage on the race course and in her fight against Batten disease captured the attention of people across the nation. The moment I crossed the finish line of that race blindfolded, I knew the magic of that day could never be repeated.

But I can’t stop running for Taylor, and I’m on a new mission now – a mission to run a race for her in all 50 states to spread this story far and wide. I’ve run around the rim of Oregon’s Crater Lake, where she and my parents found solace during her time in a historic clinical trial in Portland; I’ve run through Tennessee’s Great Smoky Mountains, just a stone’s throw from the village of Blowing Rock where we made a lot of happy memories together and my sister made the best “senior” flower girl ever on my wedding day; I’ve run in Taylor’s purple witch costume in a Great Pumpkin race in South Carolina to commemorate Halloween, her favorite holiday when she could still trick-or-treat. In the next 10 months, I’ll take Taylor’s story from North Dakota’s Red River Valley to Hawaii’s lush gardens.

First, though, comes the 2014 edition of Charlotte’s Thunder Road Half Marathon, where I’ll run 13.1 miles for my little sister as she recovers from her second surgery in a difficult year. About the time I reach the four-mile mark of the half marathon, at 8:15 a.m., approximately 30 parents and teens affiliated with an organization called Playing for Others will begin the Thunder Road 5K. The parents will be blindfolded; the teens will be their guides. In completing the 5K blindfolded, they’re honoring Taylor’s story and the fight for a better future for millions of people like her.

I wish I could run my race AND be there to see Playing for Others finish the 5K. But my experience training to become a blind runner and my relationship with my blind sister have taught me that some of the most beautiful things in this world do not have to be seen to be felt.

Playing for Others Gears Up for Thunder Road

Published: October 17, 2014 ~ 4

By Laura Edwards

Running Charlotte’s Thunder Road Half Marathon blindfolded last year was a surreal experience. With the help of my guide, Andrew, and countless other supporters, we accomplished every goal we set out to achieve.

The story didn’t end when we crossed the finish line, and while I’ll run Thunder Road sighted this year as a quick detour from my quest to race for Taylor in all 50 states, a group of teens especially close to my heart has something incredible planned for Charlotte’s largest road race.

Playing for Others is a teen organization focused on personal development, service and the arts. Taylor’s Tale was one of its chosen charities last year, and Taylor participated in its buddy program. Her “buddy,” Nicole, now a freshman in college, is a friend for life.

If you went to Thunder Road last year or saw any of the photos or many news stories on our effort, you may remember these amazing kids. About 70 of them wore purple tutus, sparkle and glitter. They wielded signs and pompoms and packed into our official cheer station at the race’s final turn. When we passed the station, all 70 of them took off after us in an unscripted, spontaneous, gorgeous burst of emotion. And when I took off the blindfold after crossing the finish line and hugged my mom, they surrounded us – and didn’t leave. It was like the end of a Disney movie, and I half expected them to carry us out on their shoulders. It was beautiful and exciting and not cheesy at all.

Playing for Others is supporting a new cast of deserving charities this year, and Taylor is no longer in the buddy program. Many of the kids in that crowd on race day graduated and went off to college. But Playing for Others hasn’t forgotten about Taylor’s Tale, and they’re creating their own version of the blindfolded run at this year’s Thunder Road 5K.

What do the kids have in store for this year’s race?

Teens have signed up to run/walk the 5K tethered to parents. The teens will be sighted; the parents will be blindfolded. Anyone not running will paint the sidelines purple with specially created t-shirts and encourage runners with their tireless spirit.

I went to the group’s first practice this past Sunday. Some of the kids and their parents are runners; some of them have never run a race. But that’s not what’s important. I remember well how Taylor was not a “runner” when she signed up for Girls on the Run in the fall of 2008. Yet she overcame blindness and the effects of Batten disease to run not one, but two 5Ks tethered to a guide. This is not about physical gifts – it’s about sheer will. And Taylor always had that in spades.

Please be on the lookout for these amazing ambassadors for Taylor’s Tale at Thunder Road on Saturday, November 15. Thank them for their amazing dedication to people like Taylor and for taking on such a remarkable personal challenge. I understand what it’s like to learn to run blind – I’ve been there. But I believe they’ve got what it takes.

On another note, if you’re planning to run the Thunder Road 5K, half marathon or full marathon, please consider running for our Taylor’s Tale team. Simply select “Taylor’s Tale” as your team when you register on the race website and wear purple on race day. Let’s paint Thunder Road purple again for the fight against rare diseases!

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.

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.