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American long-distance runner Molly Seidel won a bronze medal in Tokyo this month, crossing the finish line of the women’s Olympic marathon third overall in just her third crack in the 26.2-mile run. Tears stung the back of my eyes as I watched the daring performance of an athlete who might have just started. Later, I couldn’t help but think about how my own running career, while not exactly the makings of Olympic glory, might falter.

A pending quest

In the June edition of this column, I shared the latest development in my wound-riddled story. I’m halfway through my quest to run a race in all 50 states for my younger sister, Taylor, who lost her life to CLN1 disease (Batten disease) in 2018. I have established my personal half-marathon record. as the COVID-19 pandemic loomed in another part of the world. I had solid times in two long races this spring. But lingering pain pushed me to my longtime sports doctor, where x-rays of my left ankle lit up like an ice-blue Christmas tree.

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A few days after posting this June column, I spent about 70 minutes in the long dark tube of a mobile MRI unit. If you’ve never had an MRI, you might be surprised to learn how loud they are. An MRI machine sends an electric current through an electromagnet, which makes clicking sounds that split your ears. (Fortunately, disposable earplugs are included in the price of the expensive exam.) Patients also need to remain still, even holding their breath for short periods of time, to prevent images from becoming blurry.

Throughout my exam, I mostly tried to relax, focusing on my breathing and imagining that I was floating in a pool or lying in a field under a blanket of stars. Often, however, my thoughts drifted to Taylor, who had numerous brain MRI scans during her battle with Batten disease. (In addition to regularly monitoring her decline, my sister underwent regular MRI scans as a participant in a clinical trial to implant human central nervous system stem cells into the brain.) During this time, she remained sedated-free, which is considered dangerous for a patient with Batten disease, even when she was only 9 years old.

The many faces of courage

My sister’s MRI scans told a sobering story, especially as the months and years went on. Until we truly resolve Batten’s disease, it will always be so.

The photos of my left ankle, of course, aren’t exactly tragic in comparison. I am a runner with over 30 half marathon medals. A brother of someone with Batten disease. A carrier who did not understand it.

But for me, running has always been more than a sport. (If you’ve read my memoir, “Run to the Light,” you know what I mean when I say running saved my life.) It’s stress relief. Idea generator. Batten Disease Awareness Machine. Connection to the little sister that I will never hug again in my own life. And in this sense, MRI was tragic.

If I’m up to it physically, I’ll complete the first half of my races in 50 states next month. Anyway, I have compulsory leave ahead, with extended surgery scheduled for early next year.

I have never been as brave as my little sister, so this next leg of my own journey will surely test my courage. But whatever God and my injured left ankle have in store for me, I will never stop fighting. I will never stop moving forward, even if I have to slow down. And I’ll never, ever stop honoring 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 be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not 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 aim to spark discussion about issues related to Batten disease.

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