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.
Three weeks from today, I’ll run my second race of 2015 in the great state of Texas: the Woodlands Half Marathon outside of Houston.
I’ll be joined by other runners supporting the Beyond Batten Disease Foundation’s Will Herndon Fund. Together, we’ll mark World Rare Disease Day by honoring millions who, like 11-year-old Will and my sister Taylor, are battling a rare disease.
Diagnosed with juvenile Batten disease at age 6, Will hopes to learn braille, because he really wants to be able to read. He also wants a guide dog, so he can be more independent. Most important of all, Will dreams of becoming a zookeeper one day. Will would love to rescue and train animals in need.
Taylor and Will haven’t met, but I hear and see a lot of my sister in Will Herndon. Taylor (diagnosed with infantile Batten disease at age 7) worked hard to learn braille after Batten disease stole her vision. She loves animals, and she used to tell me that if she couldn’t be a pop star, she’d love being a veterinarian.
EVERY kid has dreams. And of the 350 million people worldwide fighting a rare disease, 50 percent are children. Most of them are fighting a disease with no treatment or cure (more than 95 percent of rare diseases have not one single FDA-approved treatment).
That’s unacceptable. Luckily, organizations like the Will Herndon Fund, Beyond Batten Disease Foundation and Taylor’s Tale are working hard to build a better tomorrow for kids like Will and Taylor.
I won’t stop running – or fighting – until we do.