Batten Disease presents an interesting contradiction. On the one hand, it feels like Chinese water torture. Every day. How much time does my sister have left? What part of her will slip away next? She's already lost her sight. We've noticed other things, too. The surgery she endured in Oregon 11 months ago...did that work? Will it work? Will we have to fight her illness with other weapons? If only I had a magic wand in my arsenal. The worst part about Batten Disease, to me, is the utter destruction it inflicts on the bodies and minds of children like my sister. It takes their sight, which should be more than anyone should ever have to endure. But it doesn't stop there. It also takes away their ability to speak, their ability to walk, their ability to eat and drink without having to do it through a tube. It takes their minds. It takes their laughter. But it doesn't take those things in any set order. So after onset, you're left holding your breath day in and day out, waiting for the other shoe to drop. What happens next? How long will it take? About the only thing this godforsaken disease doesn't take is their love. And then, it takes their lives.

I believe in miracles. I believe in hope. Hope is different than a dream. Dreams are beautiful, but they don't always come true. Hope is something you have for a dream, but it is stronger than a dream. Anyone can dream. Only those who really, truly believe can hope.

The opposite of Chinese water torture is the sense, when you're fighting Batten Disease, that the hours and days and weeks and months and years keep coming at you more quickly than you can hardly stand. I feel this sense of urgency for what we're doing, what we're trying to do. We desperately need to spread the word about this torturous disease. We need to do it at a rate much faster than we've ever achieved before. We need to continue raising funds so the researchers fighting it in their labs can continue doing so. I've been writing this blog for almost two years now. My family stood together and told our story for the first time 22 months ago. And though we've made a difference for these children, we haven't yet done enough. Taylor still can't count on any of her dreams, though I won't tell her that. Taylor has dreams because she's a little girl. She has dreams for the simple fact that she's a human being, just like you and me. She even has hope, because though she knows she is sick, she doesn't know her own full story, the story that has already been written for her in her genes but that I hope to rewrite. Taylor has hope. She believes. I'm there with her right now. But knowing what I know, I need to keep working to be able to stay in that place.