By Laura Edwards

In the days, weeks and months that first followed my little sister’s infantile Batten disease diagnosis, we operated on overdrive. Our determination to win for Taylor fueled our fight. When we looked at her – the golden-haired angel who lost her way in the dark and struggled in math but seemed perfect in every other way – we clawed for a branch or a rock to grasp as our world fell away beneath us and everything we’d ever known – everything we’d ever taken for granted – slipped away.

We were angry; scared; defiant; we knew the facts and the statistics…and still, we dared Batten disease to take Taylor away from us. We gave new meaning to the word “believe.” We rallied friends and family to believe with us. We raised more money than we ever thought possible. We shared Taylor’s story till it reached all the developed continents of the world. We learned more about fatal diseases than we ever wanted to know.

But a second wave always follows the first. The best sprinters in the world can only sprint for so long. And that second wave brought real fear; the kind that isn’t fueled by adrenaline; the kind that comes from knowledge; the kind that doesn’t go away overnight.

This is a journey – not a sprint.

Taylor's first 5K

Batten disease will soon steal Taylor’s ability to walk. But my little sister used to run.

Taylor ran her first race on a chilly December morning in 2008, just 11 months after she endured invasive, experimental brain surgery in a hospital thousands of miles from home. I played cheerleader; an oft-injured soccer player, I didn’t do races.

After watching my little sister run across that finish line, I signed up for my first race.

One year later, I returned to the site of that shared moment to run my first half marathon in her honor.

Tar Heel 10 Miler

Since then, I’ve traded my soccer cleats for running shoes and hit the road for good. Last year, I ran over 1,000 miles – and I took every step for my sister. The way I see it, running is one of the many gifts Taylor gave to me. I don’t drink. I don’t smoke. I tried private therapy, but I didn’t like having to talk about Batten disease at predetermined times. Instead, I spend time with the people I love, I blog, and I run.

So I face this thing called Batten disease each day. It’s a test of endurance. I’ve learned to face it in chunks. I don’t think about a long race in terms of the total number of miles. I think about running a great two miles – or whatever distance lies between each aid station. In the same way, I try to focus on having good days. When I tried to fix everything about Batten disease, I felt like I couldn’t win – for Taylor or for the larger mission of Taylor’s Tale, the non-profit organization we founded in her name. But I figure that if I face “it” in small pieces, I can string together some good days. I can focus on recognizing miracles – both large and small.

It might just be that a “small” miracle is all we need.

I still believe.



5 Comments On “Endurance

  1. Heidi Bigelow Reply

    <3 Thank you for sharing. I know what you mean about only sprinting so long, then the fear takes hold. I have those days, where it still doesnt seem real that Battens Disease can really be taking my Sophia bit by bit. I hate Battens.

    1. Member Laura King Edwards Reply

      I hate Batten disease too, Heidi. It’s impossible to describe to someone who hasn’t lived it. I try my best to paint a picture of our world every time I write a new post, but no words can come close to mirroring the real tragedy of watching someone you love start a life with so much promise, only to have it taken away – bit by bit. But I know that there will be more kids like my sister and your Sophia – and I know that if the tables were turned, Taylor would fight for me. So I keep on running.

  2. hopeforheather Reply

    Beautiful. Just beautiful.

    1. Member Laura King Edwards Reply

      Thank you so much for your kind words. She inspires me!

      1. hopeforheather Reply

        That’s what I need more of….but the main things (at least right now) that inspire me are my nephews. They are my joys and lights of my life. I try to do better each day because of them. <3

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