Running Toward Everything

By Laura King Edwards

I’m traveling for races so much these days, it isn’t often that I have a chance to run in my North Carolina hometown. So I looked forward to running in today’s Charlotte 10 Miler, where I figured to see familiar faces and log a fast time on a familiar course.

But life happened, as it tends to do. I lost my father-in-law on Election Day and moved into a new house on New Year’s Eve. I dove into Taylor’s Tale with a sort of conviction I struggled to muster in the past several years. I stayed busy at the office. Needless to say, my feet haven’t seen much action on these fleeting winter days.

But I had a lot of things to fuel me along the 10-mile course on sleepy neighborhood streets and wooden walkways and tree-lined trails winding through urban wetlands. The Batten disease community lost six children in the past few weeks. My own sister’s stubborn star is fading. And as the morning sun lit up the sky in shades of coral and salmon and goldenrod, I inked not one, but two names, on my arm.

Charlotte sunrise

The first was Taylor’s. I’ve been running races for a purpose since I took my first steps at Chapel Hill’s Tar Heel 10 Miler on a spring day in 2009, four months after my blind sister crossed the finish line of her first 5K with her face turned toward heaven.

Charlotte 10 Miler for Taylor

The second was Bridget’s. Twelve-year-old Bridget Kennicott gained her angel wings on February 15 after a brave battle against late infantile Batten disease. I’ll never forget the first time I met Bridget and her family at a Batten Disease Support and Research Association conference in Chicago. Bridget’s dad, Dave, sat behind me at a research session in one of the hotel’s chilly conference rooms. Bridget looked like a sleeping angel in the stroller beside him. When I twisted in my chair to say hello, she took hold of my finger and didn’t let go.

Something my sister used to do.

 

Charlotte 10 Miler for Bridget

A lot happened in the months leading up to the Charlotte 10 Miler. But in this, my first race of 2017, I didn’t think much about the past. Instead, as I weaved through colorful flashes of wicking shirts and race bibs and compression socks on the course this morning, I mostly thought about what I was running toward. 

7:51/mile splits. The finish line. The 35-39 age group (my birthday is in 10 days). My next race, in state 16 of 50. Exciting next steps as an author. A trip to D.C. for rare disease meetings on Capitol Hill. A gene therapy clinical trial for children with Batten disease. My sister’s tempered laugh. An evanescent smile. A radiant soul. One brilliant future realized; another extinguished.

Running toward everything.


Running for Taylor in 50 States: New Hampshire

By Laura King Edwards

New Hampshire was special.

Heather and Chris Dainiak established the Our Promise to Nicholas Foundation in 2009, not long after Nicholas, the older of their two sons, was diagnosed with late infantile Batten disease. Heather and Chris promised Nicholas they would work tirelessly to find a cure for the monster stealing his sight and motor coordination and wracking his body with seizures.  continue reading →


Ten Years of Pain

By Laura King Edwards

I’ll never forget my first Batten disease conference.

I was 25 that summer, still young and naive and supremely confident. My sister, not quite 9, had some of her vision and legs that worked and a smile that could light up a room. She could talk and sing and she didn’t have seizures. We’d known about her illness for almost a year, but I just couldn’t picture her getting as sick as the kids whose photos I’d seen on the Batten association site.  continue reading →


Counting Batten Disease in Years

By Laura Edwards

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis –  mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do. continue reading →