Ten Miles for One in 10

By Laura Edwards

This Saturday, I’ll run the Charlotte 10 Miler in Taylor’s honor for the third consecutive year.

My little sister’s brave fight against Batten disease inspires me to lace up my running shoes day after day, but this race is special because it kicks off the week leading up to World Rare Disease Day. Rare Disease Day is an international event founded by EURORDIS (Rare Diseases Europe) and sponsored stateside by the National Organization for Rare Disorders (NORD). It highlights the need for improved support for rare disease victims, their caregivers and the health care providers and scientists who dedicate their careers and lives to treating rare disease patients.

You may believe rare disease is a problem that affects an unfortunate few, but it’s not. Together, rare diseases affect about 30 million Americans, or one in 10 people. And worldwide, rare diseases impact more people than AIDS and cancer combined. Plus, most rare diseases are serious, chronic illnesses; that means they lead to not only incredible emotional and physical suffering, but also staggering costs when it comes to ongoing care. Rare disease is a serious public health issue, and while even a single life is precious, one in 10 is just too common to ignore.

“Rare diseases affect about 30 million Americans, or one in 10 people.”

Taylor portrait

I went for a 5K run tonight, my first in several days after having minor surgery Monday morning. The night was unseasonably warm, and as I picked up speed on a long, open stretch of pavement in my neighborhood and felt the fresh air fill my lungs, I thanked God for giving me two legs and feet. As I ran beneath a red caution light at an intersection, I had a memory of a night early in my training to become a blind runner last year, before I began wearing a blindfold. On that night, I ran with my eyes closed, but the light was bright enough in the dark sky that I could see it even through my closed lids. As I ran beneath the light tonight, my blindfolded half marathon behind me, I thanked God for giving me two eyes that can see. And as I wound down at the end of my run, finishing with a mile at race pace despite having just had surgery two days earlier, I thought about how simple my problems are compared to those of my sister and so many others battling a rare disease.

That’s why, on Saturday, I’ll lace up my shoes for all of them at the Charlotte 10 Miler: 10 miles for one in 10.

That’s why, on World Rare Disease Day next Friday, Feb. 28, I’ll join others from Taylor’s Tale in leading the Charlotte community in a candlelight vigil to honor and remember all those affected by rare disease.

That’s why I’ll never stop fighting for a better tomorrow for people like Taylor – the one in 10 who, just like you and I, deserve a chance to run this race we call life.

Taylor’s Tale will host a candlelight vigil at Freedom Park in Charlotte, NC on Friday, Feb. 28 at 6 p.m. to commemorate Rare Disease Day. The vigil is free and open to the public. Learn More

Unnatural Order

By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren.  She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, Batten disease burst into our world and shattered it into a thousand little pieces.

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.


By Laura Edwards

I had surgery on Monday morning to remove the larger of two hard, swollen lymph nodes on the back of my neck. For more than a month since discovering the second node, I’ve over-Googled and WebMD’ed “lymph nodes” and “Hodgkin’s disease” and “lymphoma” and everything in between. By the time I arrived at the hospital before sunrise on Monday, a part of me wasn’t sure I wanted to get the results of the biopsy after the surgery.

My surgeon’s office left a voicemail on my cell phone sometime this morning. When I returned the call, the receptionist put me on hold for what seemed like an eternity; finally, the nurse came on the line and wasted no time letting me know that the node was benign. In the minute or so that I’d been on hold, I think I actually convinced myself that I had cancer, so when I heard a voice telling me otherwise, I wasn’t even quite sure how to react. Quite frankly, I’d spent so much time imagining bad news that I didn’t know how to handle good news, at least not right away. After the words had had sufficient time to sink in (all while the angel on the other end of the line stayed put), I rediscovered the reality of my own essentially good health and hurriedly asked mundane questions like, “When can I play soccer again?” and “Can I take normal showers yet?” And the ghost of cancer drifted out of my life before we ever really got to know each other, just like that.
These past several weeks not withstanding, and especially if you eliminate stress as an indicator, I tend to take my own health much for granted. I assume that tomorrow, I will still be able to run and kick a ball and see the world all around me and hear its many voices and breathe its air and find my own words. But I cannot take a single day for granted.
My sister cannot take her tomorrows for granted, and unless I can learn to appreciate a world that does not include her, I won’t be able to rest.
Taylor has Batten disease.
If that phone call today had been different? If they had asked me to come in to discuss the results rather than receiving them over the phone (what fun that drive to Matthews would have been)? What then? Well, I’ve already said how unsettling the thought of being diagnosed with cancer was to me – as it would be for anyone. But the truth is, even if that had been the case, I’d have been given options, at least. The wonders of medical science would have been waiting in the wings to receive me and give me the best shot decades of research could buy.
When T was diagnosed with Batten disease, we received instructions on how to seek out support for what would, no doubt, be a very difficult journey – a journey with a predetermined ending. If I took that ending for granted, I wouldn’t be posting right now.