2013: The Memories

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.

Grandma Kathryn and Taylor

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.

group at Rare Disease Day event

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.

Fletcher cardiofunk event

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.

NIH speech

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.

Chapel Hill visit

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.

the finish line

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.

Taylor with medal

Wide Diversity of NPOs

By Laura King Edwards

A nonprofit organization (NPO) is an organization that uses surplus revenues to achieve its goals rather than distributing them as profit or dividends.

While not-for-profit organizations are permitted to generate surplus revenues, they must be retained by the organization for its self-preservation, expansion, or plans. NPOs have controlling members or a board of directors. Many have paid staff including management, while others employ unpaid volunteers and even executives who work with or without compensation (occasionally nominal). Where there is a token fee, in general, it is used to meet legal requirements for establishing a contract between the executive and the organization.

Designation as a nonprofit does not mean that the organization does not intend to make a profit, but rather that the organization has no owners and that the funds realized in the operation of the organization will not be used to benefit any owners. The extent to which an NPO can generate surplus revenues may be constrained or use of surplus revenues may be restricted.

The Speech of Angels

By Laura Edwards

“Music is well said to be the speech of angels.” ~Thomas Carlyle

The Sound of Music, Taylor’s favorite movie, is on TV tonight, and the Taylor’s Tale Facebook page received the following note from one of my sister’s angels:

This message is for Taylor!

Tayyy! I’m watching Sound of Music and can’t help but think of you and the times we sang Do Re Me! I hope you are singing it in your heart right now!

Miss you and love you!

I remember a time when Taylor sang every note with Maria. But while the governess’ voice will forever grace the WWII-era Austrian countryside, my sister’s singing voice has gone silent.

Batten disease is ruthless, but it can’t touch what’s in our hearts. And in her heart, Taylor is always singing.

The Beacon

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.

blindfolded runSince 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.

Taylor with medalI’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?

My Sister’s Legacy

By Laura Edwards

balloonsMy sister has a 501(c)3 non-profit organization named for her. She’s the face of Taylor’s Tale and the inspiration for the work we do. People from North Carolina to California and the United States to Australia have heard of Taylor King.

We could name a building or a wing or a monument or a garden for my sister. We could adopt a mascot influenced by all of Taylor’s favorite things. We could put her name on an annual event to make it more difficult for the public to forget her.

But none of those things will help future Taylors. None of those things will save lives.

My sister’s very sick. We’ve never denied that fact. We’ve fought like hell to keep her healthy. We’ve fought like hell to beat Batten disease till it couldn’t come back.

But now, tomorrow is today. I run as fast as I can, but some days, I just can’t run fast enough.

I fight for Taylor because I love her. I fight Batten disease because I hate its guts. I fight rare diseases because I don’t think 350 million people deserve to be told their disease is “just too rare.”

But I don’t want a trophy for anything we’ve accomplished. Batten disease is still killing kids, so we haven’t achieved what we set out to do. And I think Taylor’s life is worth more than a thousand trophies.

I just want an answer for people like her. I BELIEVE we’ll get there. And one day soon, when scared parents sit in the bad news chairs in a doctor’s office somewhere and the doctor says, “It’s very serious, but this is what we’re going to do together to fix it,” THAT will be her legacy.

My little sister turned 15 in August. I can’t talk with her anymore, but her smiles and laughs offer a glimpse of the Taylor I know is still in there, bottled up and fighting, always fighting against the monster in her genes. Her quiet courage has inspired people across the globe to fight for a better world for people like her.

That may just be her greatest legacy of all.

A Spidery Web

By Laura Edwards

Halloween front porch

Autumn hasn’t yet arrived to paint my hometown of Charlotte with its palette of brilliant crimson, gold and flame. But when I went for a solo run to train for the Thunder Road Half Marathon this afternoon, kids played in their Halloween costumes in cul-de-sacs, and the smoky sweetness of fall hung in the air. Pumpkins destined to become jack-o’-lanterns dotted every other front porch.

Just as I found my stride, my mind began to wander to memories of my grandmother. Born on Oct. 31 in 1940, Grandma Kathryn loved Halloween. I called her my Halloween witch, but if she was a witch, she was more like Glenda the Good Witch of the North than her green-hued sister from the West or her ill-fated, ruby slipper-wearing sister from the East. Born on Halloween, she never did a ghoulish thing in her life, instead living a life every bit worthy of the angel wings she received this past Christmas Day. She was far too young to go, and sometimes I think that maybe she was just too good for this world – that God had a greater purpose for her in a place we can’t even imagine. I haven’t always lived my life with honor, but she did, and when I go about my days now, I try to think about what my grandmother would have done before I act.

A love of Halloween is something my sister and my grandmother shared. Taylor’s a girly girl to the core, so a holiday based on a big game of dress-up suited her just fine. She didn’t even much care about eating the candy. But a couple of her costumes “required” eye makeup, blush and a touch of lip gloss. My sister once decorated herself and the cream-colored rug in our parents’ dressing area while sampling all of our mom’s cosmetic products. She couldn’t wait to wear makeup, even as a toddler, and Halloween gave her an excuse to wear lipstick way before she turned 16.

Then, of course, Batten disease crashed into our lives in 2006, the year Taylor turned 8. It didn’t so much crash into my sister’s life as slide into it, because while all of us absorbed our new, terrible knowledge about the progression and ultimate outcome of a disease we’d just met and figured out how to fight it, Taylor remained an oblivious third grader with some night vision loss and learning difficulties.

As the years passed, Taylor, too, got tangled in the spidery web that is Batten disease. In a cruel, ironic twist, what used to be one of her favorite nights of the year became a twist of the knife in all of our backs, including hers. As my sister’s vision and mobility worsened with time, navigating the neighborhood streets during trick-or-treating became more and more difficult. More painful than that, though, was watching as she stood in the open doorways of neighbors who didn’t know about her illness, and the neighbors waited expectedly for her to reach out and take candy from the outstretched bowl. When she stood there motionless – because she couldn’t see the bowl – John, my dad or I reached out in silence to take a few pieces of candy and drop them into Taylor’s trick-or-treat bag.

The only thing that stopped me from losing it in those moments was the sight of my sister on all of those front porches, blind and quickly losing her footing on a slippery slope above the deep, dark chasm of Batten disease, nevertheless standing stick-straight, her shoulders back and her head held high, wearing her Halloween costume like a champ.

What I Learned in Healthcare

By Laura Edwards

Today, I worked my last day for Novant Health, a large, not-for-profit organization focused on solving the toughest healthcare issues and making a difference in the lives of patients and their families. I learned a lot about medicine and marketing and working with doctors and leaders in my role on the company’s marketing and public relations team. After I said my tearful goodbyes to my teammates late this afternoon and pointed my car toward home, I thought about what I would say to a friend if he or she asked what I learned in my near-eight-year tenure. I know far more about open heart surgeries and concussion care than I ever expected to know working toward a degree in English and avoiding science classes like the plague. I can tell you all about radial catheterizations and transcranial Doppler testing to measure the velocity of blood flow in the brain’s blood vessels. All of that stuff’s cool, and it makes me sound way smarter than I really am. But if someone asked me what stands out most from my eight years with the hospital, I’d name these eight things:

  • HIPAA isn’t a large, plant-eating mammal with big teeth from sub-Saharan Africa, and if you work in healthcare communications, you’d better know what it is.

By Kabacchi (Hippopotamus – 04) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

  • If you don’t like acronyms, pick another industry.
  • A lot of people working in healthcare are healthcare “lifers.” They enter the industry right after college/nursing/medical/technical school and never leave. They have their babies at their “office,” and their coworkers are their best friends. That’s unusual in today’s world, but it’s also really cool. I left healthcare when I drove away from my office today, but it will always be part of me, because working in healthcare is about more than what’s listed in your job description. I won’t write web copy or press releases or marketing plans for the hospital anymore, but working in healthcare changed my view of the patient-caregiver relationship and helped me see another side of the human condition. I’m no longer employed by Novant Health, but that stuff will be part of me forever.
  • If you work in healthcare, you get to work with some pretty cool people. But if you stick around long enough, you might get to meet some FAMOUS cool people.
group MJ photo

Some of my colleagues and me with Michael Jordan at a commercial shoot

  • The patient is ALWAYS most important. Period.
  • There is ALWAYS a good story to tell. Sometimes, the best stories are the hardest to find, because the stars are so humble, they don’t realize the power of their actions. I had the opportunity to write for two books of remarkable stories my company published that won awards and gained widespread coverage. The stories didn’t tout our latest technologies or medical breakthroughs, but rather the “little” things special people did to change the lives of others just by being themselves. An administrative specialist for the heart failure program calls an elderly patient who lost his wife in recent years at the same time every Friday – and they talk about everything BUT heart failure; a licensed practical nurse at an inpatient behavioral health unit stocks her personal locker with a treasure trove of clothing and personal hygiene items to help create comfort and a sense of order for patients during their stay. The books are still the coolest projects of my career.
  • Be kind to people. Take the time to make eye contact. Smile and say hello. You never know what someone is facing. Walking down the main hallway of the hospital, I could pass scared parents on the way from the cafeteria to our children’s hospital to visit their son or daughter, or a man on the way to tell his wife goodbye for the last time.
  • Miracles happen every day.

Oregon hospital

A Jackson Hole Half Marathon, and 60 Miles at High Altitude for Taylor

By Laura Edwards

I haven’t gone on a blind run in three weeks, but I keep logging miles for Taylor. If you follow my blog, you know my ankles are trashed. And if you read this post from a couple of weeks ago, you’ll remember that I re-injured one of them trimming my roses. Yeah, trimming roses – not playing soccer or kicking butt in a race. That injury made me wonder, for the first time, whether or not I’d really make it to Nov. 16, the date of the Thunder Road Half Marathon, healthy enough to run 13.1 miles with a blindfold over my eyes.

I had a tough time limping up my mountainous driveway after the latest gardening injury, so logic would say I’d take a couple of weeks off from weight-bearing activity. But instead, I hopped on a plane bound for the Jackson Hole airport at 7:00 the very next morning. After a hasty connection in Salt Lake City and, with deepest apologies to my home state of North Carolina, the best pulled pork sandwich I’ve ever had in downtown Jackson, my husband and I set foot on our first trailhead in Grand Teton National Park by 2:15 p.m. MST. I laced up my ankle braces and my top-of-the-line boots, said a prayer to God, dug my poles into the Wyoming dirt and hiked my first 3.2 miles to and from sparkling Taggart Lake.

Taggart LakeThat night, I set up the two chairs on the porch of our cabin so they faced each other. I went to the laundry cabin for four large bags of ice, came back, plopped down in one of the chairs, put my ugly feet in the other, wrapped my ruined ankles in the bags of ice and stuck my nose in a book for 20 minutes to avoid the funny looks I imagined the resort’s other guests might be throwing my way.

The next day, I didn’t have any swelling, which in my twisted mind means that I’m fine, whether or not I have any pain (I did). So I told John a white lie and picked a trail that would take us past a couple of popular picture-taking spots near the gorgeous Jenny Lake, then beyond the crowds and deep into Cascade Canyon, all the way to Lake Solitude, for a 19-mile roundtrip hike.

The view at Inspiration Point, perched at 7,200 feet over the sapphire waters of Jenny Lake, is enough for most people, and they turn around. When we took a break there for a drink of water and a couple of SHOT Bloks, I could see why.

Inspiration PointBut I don’t like to stop with the rest of the crowd, and while Jenny Lake is the gem, Lake Solitude sounded like the place to be. So we continued on into Cascade Canyon.

Cascade CanyonThough I have the heart and lungs of a marathon runner, I have the ankles of a kid who played every minute of too many double-overtime soccer games when she should have been on injured reserve. My latest injuries – those of the blindfolded running and gardening variety – slowed me down, and as the Wyoming daylight faded, we realized we wouldn’t make it to our lake of solitude. So we turned around early, making our 19-mile hike a 13.1-mile hike. When we reached the car later, I told myself that Taylor would be proud of the miles we’d logged. And even though we didn’t achieve our goal, those miles were good enough for me.

We hiked our Jackson Hole half marathon for Taylor on just our second day out of nine full days in Wyoming. In fact, our “half marathon” didn’t even represent our toughest hike; that would be our journey to a point high above Amphitheater Lake in the Lupine Meadows area of Jackson Hole – a shorter hike at about 10.6 miles, but with an approximate 3,350-foot elevation gain over 5.3 miles to 10,000 feet above sea level.

Amphitheater Lake ridgeIn total, we hiked 60 miles. I dedicated all 60 to my sister. Some of the miles were easy. Some of them were hard. Because of my ankles, some of them were tougher than they had to be. But the rewards, from the wildlife we encountered to the sweeping views we enjoyed to the cleansing effect the mountains had on my soul, made every tough mile worth the effort.

That’s how I hope our fight against Batten disease will be, in the end. Some days it is. Some days we get amazing news or score an incredible (small) victory or witness something powerful in my sister that, like a gorgeous view or a long, invigorating drink of fresh, clean water, gives me strength for the next set of switchbacks up the mountain. Some days Batten disease knocks us down and kicks dirt in our face and rubs rocks in our wounds. There are more of those days. But the good days are so much more powerful that they overcome the bad, even though they’re outnumbered.

I called my parents one night while I was icing my ankles on the porch of our cabin in Jackson. Mom put Taylor on the phone, and I told her about the big bull moose John and I saw in the woods. I told her about his chocolate skin and his huge rack of antlers and how lazy he was, just sitting there chewing on grass in the trees while people took pictures of him. Mom told me that was the first time Taylor laughed all day.

mooseI had so much fun describing that moose to my sister. But I wish she could join me on the trails so I could REALLY share my love of hiking with her. I loved coming up with ways to tell her about the moose, but I wish Taylor could experience things like that for herself.

While I took another trip of a lifetime, Taylor sat at home, waiting for her big sister to call and tell her about sights and sounds and experiences that she can only dream about.

That’s why I hate Batten disease.

That’s why I’ll never stop fighting.

Is it Important to have Dreams?

By Laura Edwards

I devote a lot of words to talking about my dreams for my little sister, Taylor, and our fight against Batten disease. But I don’t spend a lot of time talking about her dreams.

Taylor can’t talk to me about her dreams anymore. I haven’t gotten an update in a couple of years. She used to want to be a pop star or a vet.

I wish Taylor could tell me what she dreams about now. To be a teacher? Or a doctor? To travel the world? To see again? To not be sick?

Taylor turned 15 last month. At 15, I wanted to earn a soccer scholarship and write books and draw for Disney. I wanted to explore the world. I wanted to have lifelong friends. I wanted my grandmother to live forever. I wanted to fall in love.

At 31, I’m still pretty athletic. I haven’t finished my first book, but I’m close. I didn’t end up drawing for Disney, but while I love to draw, I love to write more. I’ve been to amazing places. I still spend time with friends I met before I could drive, and I married my high school sweetheart. I have an incredible family. I lost my grandmother and other people close to me. I’ve learned that loss is a part of life, but I’ve lived a lot of my dreams.

I’ve lived a lot of my dreams, and it makes me crazy that monsters like Batten disease keep kids like Taylor from living theirs.

What were your dreams at 15? At 31? Did they change? Did you achieve all of them? If not, why? Is it important to have dreams?