I wish with all my heart that I’d never heard of Batten disease.
But when a geneticist diagnosed my little sister with Batten disease on July 24, 2006, Batten disease took a major hit. Because it didn’t take my mom very long to decide that she wanted to kick Batten’s butt. And my mom never does anything halfway.
In the past six years, my mom – a music major in college – became an expert on a brain-based disease that steals the lives of its young victims and cripples their families. She became an advocate for people with rare diseases – a community that stands 350 million strong. She fought for Taylor’s survival, and she fought to give her good days, because she deserves nothing less. She fought for the lives of other people’s kids like her own life depends on it – and maybe it does. She asked the tough questions when everyone else was too afraid or too busy to do so and demanded the very best out of anyone with a decent chance to give kids like Taylor a rosier future.
I served as president of Taylor’s Tale for two years, and I’ll never stop telling our story. But Mom was and will always be our leader. We’re standing on the edge of a canyon, and the answer to Batten disease is on the other side. But since Mom came into the fray, that canyon has gotten narrower and narrower. One day, we’ll cross it – and my mom will help lead us there. She’s doing it now.
My mom is this disease’s worst nightmare.
She gives me reason to believe.