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. That’s why I’m running 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.
When Taylor was diagnosed with infantile Batten disease in 2006, the doctor advised my parents to take her home and love her. “There’s nothing you can do,” he said.
But giving up wasn’t good enough for them or anyone in my family, least of all Taylor.
Next July will mark the 10-year anniversary of that awful day, and we’re still fighting. Taylor is in poor health, and we understand that the better future we’re building won’t be for her. But giving up was never an option, and it isn’t now.
Today, I ran the 8.4-mile Loop Race in Philadelphia, making Pennsylvania state number 10 in my quest to race in all 50. A “rare” distance for a rare disease, it brought together area families affected by rare disease and passionate advocates working on their behalf:
- Garrett Coyne, 5, who has infantile Batten disease, and his family
- Kristin and Mike Smedley of Curing Retinal Blindness Foundation
- The Ferrandinos and the Froios, who lost their children to Batten disease
- Stephanie Fischer of the EveryLife Foundation for Rare Diseases
- Becky and Tracy of BDSRA
- Lauren and Dan of Spark Therapeutics
I showed up for the race with a broken wing; the tendon injury that’s given me problems off and on since early spring reared its ugly head this weekend. Pain shot through my leg before I crossed the timing mats at the start, and I knew that finishing would be a struggle. Thank goodness for small blessings: compression socks, a (mostly) flat course and picture-perfect running weather.
Malinda, a mother, advocate and runner I’ve only met on Twitter, picked out my purple Taylor’s Tale shirt in the crowd at the start. A brief moment in time, our meeting gave me the kick I needed to make a strong start. This stuff is working, I told myself with a grin.
Early on I settled into a 7:25 pace, doing my best to ignore my pain and my competitive streak as other runners passed me.
The pain was relentless, though, and three miles into state number 10, I remembered it’s a long road to 50. I slowed my pace.
Every time my Garmin ticked off another mile on the 8.4-mile course, I told my pleading leg we were that much closer to the finish. But by mile six, my silent pep talks had stopped working.
That’s when I saw the shirt.
The owner of the shirt wasn’t entered into the race. She was circling the loop in the opposite direction. Her legs looked fresh, and she held her head high. But the phrase on her shirt is what I’ll always remember:
Isn’t that the key to saving millions like Taylor?
Isn’t it the key to everything?
I never made it back to my starting pace, but I found a way to fight through the pain. When the finish line came into view, it almost took me by surprise. I waved to my mother, and I headed for the end of another race and another state – another chapter in the story.
Best to the amazing families and rare disease advocates who made our trip to Philadelphia unforgettable. Never stop believing. It’s amazing what you can achieve when you redefine possible!