When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.
On National Running Day 2014, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
Yesterday morning, I flew to Texas for state number five and the Woodlands Half Marathon, the hometown race of local hero Will Herndon.
Now 12, Will Herndon was diagnosed with juvenile Batten disease in 2009. His family reminds me of my own: heartbroken, but determined to build a better future for kids like Will and Taylor. Not long after Will’s diagnosis, they founded the Will Herndon Fund at the Beyond Batten Disease Foundation.
I’d met Will’s mother, Missy Herndon, at past Batten Disease Support & Research Association conferences, but I met Will for the first time at Friday evening’s 2K Family Fun Run/Walk.
Missy is a lot like my mom in her determination to beat this disease. Will is a lot like my sister Taylor: energetic and social, with a magnetic personality. It’s easy to see why The Woodlands community has rallied to save the life of Will Herndon. It’s easy to hate a monster like Batten disease that steals the lives of kids like Will and Taylor.
Race morning was stressful and harried. I’d hoped to meet up with the Will’s Warriors crew for a photo prior to the race, but in the pre-dawn park milling with thousands of people, I couldn’t find them and at the last minute hopped into the line for the bathroom, which snaked around Town Green Park. The line moved at a snail’s pace, and my stress level built as I remembered the race instructions in all caps that reminded runners the corral closing times would be strictly enforced. I worried that if I didn’t make it to my assigned corral in time, I’d be shut out, and my shot at Texas – at least this time around – would be over.
With eight minutes to spare, a race official told those of us still in line that the Porta-Jons on the other end of the park had no lines and would be quicker. My husband, John (dedicated race logistics guy) and I took off at a sprint. But the line of Porta-Jons was farther away than promised, and by the time I made it back to my corral, I was cutting it close. I thought I was in the clear, but the corral entrance was narrow and other latecomers had clogged the entrance. A race official barred the opening and told us we couldn’t enter. I looked at my watch. I still had two minutes! When he looked the other way, I slipped inside; at least 10 other runners did the same.
Once I made it inside the corral, 20 minutes remained till the starting gun, and I wanted to stretch. But we were packed in like Texas cattle, and there wasn’t enough room.
It was slow going at the start as the corrals emptied onto a narrow road, and I ran my slowest split of the race through the first mile. But then the field opened up, and I found my stride, settling into a pace right around 7:45/mile.
Around mile five, my temporary good fortune faded. I began regretting the water I’d gulped before the race and at the generous aid stations, and after forgoing two opportunities, I finally stopped at a row of Porta-Jons. That lumped two minutes onto my time. And when I came out, I discovered that somehow I’d loosened the race belt that holds my phone and energy gels such that it bounced up and down when I ran. After three tries, I finally got it tightened such that it stayed put on my hips (sort of).
I’d wasted almost five minutes, and the group I’d drafted for the first portion of the course was long gone. But there was nothing I could do about that, so I slid back into the race and recovered my stride.
I looked for Will’s Warriors at their mile 10 cheer station, but I was ahead of more than 90 percent of the field and had beaten them there. A hundred yards or so shy of the mile marker, a dad stood alongside the course with his son, who wore a Will’s Warriors “HOPE” t-shirt. I ran halfway across the road and gave the kid a low-five. He probably thought I was crazy.
Normally the master of negative splits (for non-runners, that means I log my fastest miles at the end of a race), I felt spent toward the end of The Woodlands Half Marathon. Somehow I found my higher gear, finishing with a 7:47/mile. I crossed the finish line at 1:46:04 – less than two minutes off my personal record (PR) for the half marathon (set last November on a tougher course, running the last 1.25 miles blindfolded).
At first I was disappointed for missing my PR; I couldn’t stop thinking about how much time I’d lost back at mile five. But then I considered that I’d flown halfway across the country just 18 hours prior to the start of the race, walked all over town when I arrived and grabbed maybe five hours of sleep prior to my 4:45 a.m. wake-up call.
All of that was nothing, however, compared to what my family had endured in the days leading up to my departure for Texas. Because on Wednesday morning, my little sister was rushed to the hospital by medic and admitted.
It wasn’t the first time Taylor had taken an ambulance ride; 2014 was a difficult year. This time, though, it was different. As I packed my bags Thursday evening, I seriously considered calling off my trip. When I kissed my sister goodbye and left her lying in the sterile, cold room, I thought maybe she’d never leave the hospital. I wasn’t the only one who felt this way.
But somehow, Taylor pushed through, and as I zipped my suitcase in Charlotte on Friday morning, I got a text from my dad:
“Getting ready to go home!”
Final score, for one day at least: Taylor 1, Batten disease 0.
I’m not naive. I know more about Batten disease than most doctors. I know where we are. I know the horrors my sister endured last week stole parts of her she’ll never get back. And so I think about Taylor, and I think about Will Herndon – in whom I see so much of the sister I remember from before Batten disease stole her voice and her ability to walk.
I think about kids like Taylor and Will, and I feel only gratitude for missing my PR by two minutes. Because running is a blessing.
Together, we WILL beat this disease. Where there’s a Will, there’s a way!
Many thanks to Carolyn Frank, Missy and Wayne Herndon and the Will Herndon Fund of the Beyond Batten Disease Foundation for hosting me for my Texas race. Most of all, thank you to Will, Taylor and countless others like them for inspiring me with their courage each and every day.
Race day in Texas also marked World Rare Disease Day–a worldwide event dedicated to raising awareness of rare disease. About 95 percent of rare diseases do not have a single FDA-approved treatment. People like Will and Taylor deserve better!