Five years ago tonight, a small but determined group of women known as “Taylor’s Tale” threw a huge party in honor of my little sister and kids everywhere fighting Batten disease. We called it “Touchdown for Taylor.”
When guests arrived, Sir Purr, the Carolina Panthers mascot, greeted them on the steps of the beautiful home of our gracious hosts.
Inside, they mingled with former Batten Disease Support & Research Association director Lance Johnston and researcher Sandy Hofmann, MD, PhD, who had just gotten a $50,000 grant from Taylor’s Tale – the birth of a project of paramount importance in the fight against infantile Batten disease.
They heard a special message from NFL commissioner Roger Goodell and watched a slideshow of my then 9-year-old sister’s life that still chokes me up. They heard from my mom. They heard from me.
They heard a great band, enjoyed each other’s company and ate incredible food.
They gave my family, just a little more than a year removed from Taylor’s diagnosis, a fire for the fight that burns to this day. And at the end of the night, they gave Taylor’s Tale $40,000 for that fight, matching our first-ever event, “Chapter One,” nine months earlier. Just as importantly, though, they energized us. They energized me. They helped me believe in my own words when I told people we’d find a way to beat Batten disease.
Taylor is not the long golden-haired, sighted, chattering, singing fourth-grader my parents left at home with a babysitter on the night of Touchdown for Taylor. But she still has every ounce of courage she had back then.
And we’re still fighting.