A Lifetime of Lessons

By Laura Edwards

Eight years ago today, my little sister was diagnosed with infantile Batten disease. This photo was taken several months later. We caught a hayride to a pumpkin patch on a farm, and she helped me pick out the perfect pumpkin.

pumpkin patch

Back then, Taylor still smiled for the camera and blinked in bright sunlight. She talked a mile a minute and ran up and down the stairs with her dog at her heels. She went to school and danced with boys under a disco ball in the school cafeteria. She went to the mall with her girlfriends on the weekends.

Since then, she’s taught me a lifetime of lessons about faith and courage. Batten disease may be winning this battle, but Taylor’s still fighting. I think I’ll keep fighting, too.

back porch


Fighting a Chronic, Terminal Disease

By Laura Edwards

horseback ridingAn article reprinted from the Washington Post was on the front page of a newspaper lying on the kitchen island at my office this morning. I never read the papers in the kitchen (and I’m in PR), but the headline caught my eye.

“Living with a husband’s chronic illness has a bad effect on his wife’s health,” it said. I set down my water, picked up the paper and scanned the article. My eyes immediately landed on a quote about halfway down the article.

“Terminal illness has an end date. Chronic illness is enduring.”

Yes, that’s true, I thought. But what if the illness you’re fighting is both?

I’ve written a blog and most of the print and electronic communications for Taylor’s Tale since our founding more than seven years ago, not long after my little sister’s diagnosis. Mom never wanted me to use the word “terminal” when writing about Batten disease; she preferred that I say “life-threatening.” She said “terminal” felt cold; sterile; hopeless. She’s right. But right now, that’s how a Batten disease diagnosis feels. That’s how it feels in my chest when I see what it’s done to my sister in eight years.

The life we live afterward doesn’t have to be. Though I’m realistic about my sister’s situation, I believe in what we’re doing even more than I did from day one because of what I’ve learned. And if I had it to do all over again, I’d fight just as hard for Taylor’s life even knowing what I know now. Because I know that someday, soon, “terminal” won’t be an appropriate label for this godforsaken disease.


Help Us Get on the Cover of Runner’s World!

By Laura Edwards

I need your help!

As you likely know, I ran Charlotte’s Thunder Road Half Marathon blindfolded to honor my little sister, Taylor; my next challenge is to compete for her in all 50 states, beginning with an epic race later this summer.

Our story has a chance to be on the cover of Runner’s World magazine. This kind of exposure would be amazing for our fight to save millions suffering from rare diseases. That’s where you come in.

Click here to vote for our story. It takes five seconds, and no app download is required. Vote EVERY DAY between now and Aug. 15. We’re in the top 10 right now, but we won’t win without your support. So, share this with everyone you know, and vote often. Thanks so much!

Here is a copy of my entry:

HOW DID YOU START RUNNING?

I’ve been running for most of my life and played competitive soccer through college, but I didn’t start entering races regularly until watching my little sister, Taylor, battling a fatal brain disease that causes blindness, run her first 5K at age 10 in 2008. Running gave Taylor a chance to be a “normal” kid, and I love it for that. At the finish line that day, I made a silent promise to run for Taylor as long as possible, both to honor her incredible courage and to raise awareness of Batten disease, the illness that will take her life.

WHAT IS THE PERSONAL RUNNING ACCOMPLISHMENT YOU ARE MOST PROUD OF?

In November 2013, I returned to the event where Taylor ran her first 5K. To honor the fifth anniversary of her brave 3.1-mile run, I wore a blindfold bearing the phrase “4Taylor,” which I’ve inked on my arm for all of my races. With a guide, I ran the half marathon blindfolded in under two hours. I ran portions of the race “untethered,” and my team and I raised money and gained national exposure for Taylor’s Tale, the non-profit organization I co-founded in Taylor’s honor. My next challenge is to run a race in all 50 states for Taylor.

WHY IS RUNNING IMPORTANT TO YOU?

Aside from the fitness benefit, running is a great way to relieve stress, and I do some of my best thinking on the run. Most of all, it helps me feel close to my little sister, who can no longer run because of her disease. During my blindfolded half marathon, I ran untethered several times, and I never felt closer to Taylor than during those stretches. 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.

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The Dying of the Light

By Laura Edwards

My grandparents used to have a beach house on Oak Island, a finger of land at the southern tip of North Carolina. Nearly every summer, we spent the Fourth of July week on the island; on the Fourth, we packed a huge picnic, piled into cars, drove across the Intracoastal Waterway and into Southport, a charming town raised where the Cape Fear River meets the Atlantic Ocean.

Before reaching the waterfront park, as if we didn’t already have enough food, we stopped at Hardee’s for a southern feast of fried chicken and biscuits and mashed potatoes and gravy and sugary sweet tea.

At the water’s edge, we spread our blankets on the short-clipped grass and stretched out to fill our bellies under a hazy blue sky while the boats drifted by. As the evening wore on, the lawn filled. My brother and I danced through the blankets and chairs clutching soft dollar bills from my Grandma Kathryn. We bought snow cones and glow-necklaces at the pier before the summer sun disappeared and the fireworks lit up the sky.

Time changes us all.

My grandparents had to sell the beach house around the time Taylor was born; it’s been many years since I last saw the Cape Fear River sky lit up by sparkling streaks of red, blue, green, purple, orange, yellow, silver and gold. My grandmother fought a brave battle against Lewy body dementia, but Lewy body dementia always wins; we said goodbye to her on Christmas Day 2012. And my sister, whose bright eyes used to drink in the world and all its beauty, lives in a world of darkness.

fourth of julyThis Fourth of July, John and I invited family and friends to our house to eat burgers and brats and watch the World Cup. Toward the end of the afternoon, my parents and Taylor appeared at the door. My sister has, thankfully, gained weight since her scary stint in the hospital. She looked pretty in her cotton dress, perfect for a summer cookout. She couldn’t eat with us.

After everyone left and the kitchen was clean, John and I piled into the back of my parents’ car and went uptown with them to find a parking lot where we could watch the fireworks shot off from the minor league baseball stadium. The home team’s pitching staff isn’t very good, and the game ran late. We sat in our folding chairs for a long while and talked while we waited for the show. It was unseasonably cool and felt nice, but I missed the salt breeze on my face and the aroma of my Papa Jerry’s bucket of fried chicken, even though I never ate it.

Finally, the fireworks began. I watched in silence next to my sister’s wheelchair. I remembered our own private fireworks show in Mom and Dad’s driveway just two years earlier. That night, Taylor sat in a golf chair and clapped each time Dad shot a Roman candle or bottle rocket into the night. As they exploded over the front yard, I called out the colors, one by one, to my blind sister.

Taylor didn’t clap for the fireworks this time. Instead, I held her hand in its soft purple brace. As the show ended, I savored the warmth of her touch, and I watched the dying of the light.