My Will Is Strong to Keep Fighting Like a Sister

Laura King Edwards avatar

by Laura King Edwards |

Share this article:

Share article via email
beach to beacon | Batten Disease News | Banner for

I haven’t walked in 36 days, three hours, and 16 minutes. Not that I’m keeping count or anything.

Since having major ankle surgery on Jan. 14, I’ve undergone a crash course in life without the gift of mobility. Though I’ve been injury-riddled since I was a 17-year-old soccer midfielder, this is the longest I’ve ever spent on crutches. It’s a humbling experience and a stark reminder of just one of the many challenges my sister, Taylor, faced in her battle with CLN1 disease (Batten disease).

Since retiring from the game that destroyed my left ankle, I’ve run about 40 half-marathons and 100 total races in 25 states to honor Taylor and support Taylor’s Tale, the nonprofit organization our family and friends founded in 2007. I’m not a doctor, but I understand long-distance running isn’t exactly the best medicine for weakened ligaments.

Recommended Reading
#RAREis Representation program | Horizon Therapeutics | illustration of hands-in

More Studies Confirm Hefty Economic Burden of Rare Diseases

Life has been far from easy since my surgery. I had an open procedure to repair the lateral, or outside, ankle ligaments. The damage to my God-given ligaments was so extensive that the surgeon added Artelon, a synthetic biomaterial that functions as scaffolding to add strength and support.

While the surgery went well, I’ve struggled with nerve pain, an unfortunate but not unheard of complication. More than five weeks after the operation, I’m still unable to hold my foot at a right angle. I’ve just started putting partial weight on my left ankle, and then only while wearing a boot and holding on to a chair for support. Suffice it to say, I’ve mostly stayed horizontal.

Here’s the thing, though: While I’ve had my moments of self-pity, I’ve never forgotten what Taylor endured. Right now, it’s hard to imagine walking without pain again, much less finishing the back half of my quest to run a race in all 50 states. Yet though the tunnel may be long, I see a light at the distant end. I know that if I follow my extensive physical therapy program and generally follow the rules, I will run again.

Taylor didn’t have that luxury. I still remember the cold, damp January day when my sister’s first wheelchair was delivered to Mom and Dad’s house. We didn’t know it immediately, but that was the beginning of the end. Batten disease destroyed my sister’s body before it took her life. It took it in bits and pieces and it ripped us all apart. It was a horrible thing to watch. If you love someone with this disorder, you understand what I mean.

I hate Batten disease with every bone and every sorry ankle ligament in my body. I can’t walk across a room today, but I’ll fight tooth and nail to run 13.1 miles without stopping again. I’ll fight with everything I have to help other kids and families avoid the pain we endured.

I’ll fight like a sister. I’ll fight like Taylor.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Batten disease.


Leave a comment

Fill in the required fields to post. Your email address will not be published.