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

Since having major ankle surgery on January 14, I’ve had a crash course in life without the gift of mobility. Although I’ve been riddled with injuries since I became a football midfielder at 17, it’s the longest I’ve ever spent on crutches. This is humbling and a stark reminder of one of the many challenges my sister, Taylor, faced in her battle with CLN1 (Batten’s disease).

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

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

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

Here’s the thing, though: While I had moments of self-pity, I never forgot what Taylor went through. Right now, it’s hard to imagine walking pain free again, let alone completing 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 far end. I know that if I follow my extensive physical therapy program and generally stick to the rules, I will be run again.

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

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

I will fight like a sister. I will fight like Taylor.


To note: Batten Disease News is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 Batten disease issues.