Running for Taylor: A Change of Plans

By Laura Edwards

Eight months ago, I registered to run the Fargo Half Marathon on May 9 – the seventh leg of my 50-state quest to honor my sister Taylor, fight Batten disease and support the millions of people suffering from a rare disease.

There’s been a change of plans.

I went into Easter weekend’s Charlottesville Half Marathon nursing a tendon injury. I left Virginia with another state down, more media coverage for Taylor’s Tale and a second injury, which turned out to be a stress fracture in my foot.

walking bootNeedless to say, I won’t be running 13.1 miles in Fargo next Saturday (though I asked my doctor if I could – and if you know me, that shouldn’t surprise you). But the trip is booked, I’m staying with great hosts, and I’m not missing an opportunity to knock out North Dakota for my little sister. I had a heart-to-heart talk with my doctor about the meaning of commitment, the importance of taking care of my own body and the best way to see this crazy journey – running and otherwise – through to the end. And eventually, we both agreed I could walk the 5K in Fargo in a walking boot. So that’s what I’ll do.

It’s not how I’d imagined completing my seventh of 50 states, but in a way, it’s fitting. Every day, I think about how my sister could have quit after her Batten disease diagnosis, and no one would have questioned her character. Batten disease is that awful. But giving up was never in Taylor’s DNA. And the image of her finishing her first 5K, despite being blind and fighting Batten disease, will be with me forever. Now my sister is in a wheelchair. I remember a moment on Easter Sunday, the day after I ran that half marathon in Charlottesville and hurt my foot, when my mom and husband helped Taylor out of her wheelchair as sunlight danced on my parents’ back porch. It took several minutes and didn’t come without a struggle, but supported by two people who love her, Taylor walked three steps. Those three steps were bigger than anything I’ve ever accomplished healthy on a race course. So yeah, it stinks being injured. But if my sister can do that, I can find it in myself to be grateful for all that I have. I can walk 3.1 miles in a boot to honor her great courage.

I’m coming, Fargo!

I’ll walk the Fargo 5k in a protective boot at 6:30 p.m. on Friday, May 8. Please consider making a donation to Taylor’s Tale in support of our fight to build a better future for kids like my sister. All donations are 100 percent tax-deductible. Give Now

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2 Comments On “Running for Taylor: A Change of Plans

  1. Rick Wheelahan Reply

    Laura, I really appreciate your updates, and admire your commitment to your sister, your family, and your fight to bring attention to Battens and to rare diseases. You are a remarkable young woman. I’m not surprised you are going to do the walk in the boot (you can handle it – I’ve spent a lot of time on a boot with broken feet and never had an issue, and you are tougher) – good luck and take care.

    Somehow today I realized, I read all your updates, think about your commitment, many times repost your post so my FB friends are aware (at least), but I rarely think to donate, and I know all this stuff you do to generate awareness doesn’t come free. I donated today – and I was happy to!

    Take care!

    1. Member Laura King Edwards Reply

      Rick, thank you so much for following our story and for your kind words. I’m humbled by them, though I can’t imagine NOT doing everything I can. Taylor-just the way she’s faced her disease-she’s that much of an inspiration. We received your generous donation, and I’m thankful to you for helping us believe another day. We WILL beat this disease. 4Taylor.

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