I’ll never forget my first Batten disease conference.
I was 25 that summer, still young and naive and supremely confident. My sister, not quite 9, had some of her vision and legs that worked and a smile that could light up a room. She could talk and sing and she didn’t have seizures. We’d known about her illness for almost a year, but I just couldn’t picture her getting as sick as the kids whose photos I’d seen on the Batten association site.
In any case, that wasn’t going to happen. We’d raised more than $70,000 within four months of founding a volunteer committee called “Taylor’s Tale.” We’d started a website. We’d gotten media coverage at home and away. (I’ll never forget one of our first stories, printed in About Peterstown, a newspaper that covers life in an Italian American neighborhood in Elizabeth, New Jersey. The publisher, Joe Renna, gave Mom and Taylor a ride to the airport during one of their first trips north to visit my sister’s doctor on Staten Island. From the beginning, Taylor inspired everyone who met her.)
After the first few awful months following the diagnosis, I’d decided Batten disease couldn’t scare me. Partly because I believed and partly to survive, I convinced myself that my sister would be different. My sister would live.
Then Mom and I took the escalator from the parking garage to the lobby of the Batten disease conference hotel in Rochester.
All I could see was affected kids in wheelchairs with IV stands and tangles of cords and wires and empty, searching eyes. Blind kids who couldn’t walk, talk or swallow. Grown kids in diapers.
All I could see was sadness and sickness and death. And for the first time, I was scared out of my mind.
Eventually, Mom and I pulled ourselves together, because that’s what we do. Even in that moment when we stood frozen and silent and welled up at the top of the escalator, the steps sliding rhythmically into the floor beneath our feet, we held onto a deep-rooted faith neither of us could explain. In Rochester, we took pages of notes and talked about cures and hunted down researchers in the bar when we could have been relaxing or exploring the town. I think our confidence turned off a lot of families whose battles had already dragged them down the long, dark, twisted road of a neurodegenerative disease. Families who understood those “cures” wouldn’t come in time for their kids.
But fighting was the only thing we knew how to do. So we fought. Together, with a lot of help from good friends, we built a charity that has funded research at places like UNC and UT-Southwestern and Kings College London and Wash. U. and the NIH. We fought for the passage of a law establishing the nation’s first rare disease advisory council. We told my sister’s story to anyone who would listen.
Nine long years have passed since Mom and I rode that escalator to the top and hit bottom, and my sister is one of those kids in the lobby now. We never took her to the Batten disease conference, even when it came to our hometown of Charlotte (my mom vowed she wouldn’t do it, and she tends to keep her word). It’s hard to think about the fact that Taylor probably couldn’t make the trip now, even if we wanted to take her.
Last weekend I bought a plane ticket to St. Louis, and I’ll represent Taylor’s Tale at the annual conference two weeks from Saturday. Ten years of tragedy can change a person, and I’m a lot different today than the stubborn, self-assured, sanguine girl who stepped off that Rochester hotel escalator into a sea of loss. I no longer think we’ll save my sister’s life. In fact, I know we won’t.
But here’s the thing: I still believe.
I know we won’t save my sister’s life. But I know the effort she inspired will leave a legacy for other kids – kids whose families haven’t yet gotten the phone call or letter or sat in the geneticist’s office or attended their first Batten disease conference. Families whose kids we CAN help save. And I understand now that that’s the true meaning of “Taylor’s Tale,” the grassroots effort we founded in a Charlotte living room 10 years ago this fall. It’s not about funding research or pushing rare disease legislation or raising awareness, though we do all of those things.
Taylor’s Tale is a story of love and loss. It’s a story of what it means to believe. Because sometimes tragedy strikes, and sometimes we don’t have any way to stop it, and we don’t get the miracle we sought, but somehow, some way, we scratch and claw and fight until we find another road or another light or another way. That’s what fighters do, whether they’re visiting research labs or walking hallways in Washington or just trying to make happy memories with the people they love.
And after all these years, I finally understand what’s so special about all of those kids who left me frozen in my tracks that day in Rochester so long ago.
They’re the biggest fighters of all.
Thanks to everyone who ever listened to us when we said we wouldn’t take “no cure” for an answer. Thanks to all families fighting Batten disease for your courage and grace on a journey no one should ever have to face. Thanks to my sister, Taylor, for being my inspiration, every day, now and forever.
If you’re going to St. Louis, I’ll see you there.