Some people out there have questioned our mission. How can we possibly believe we have a chance to save Taylor? Even if they don't come out and say it, their feelings are apparent.

Batten Disease is the disease from hell. It's the worst thing I've ever heard of. If I'd heard of it before T was diagnosed, I would still say it's the disease from hell. It's ripped our lives apart and will take T's life completely if we don't do something quickly. We still have faith, though. Those of us who have no choice but to face it wouldn't be able to face each new day if we didn't have faith.

The science of medicine is fascinating. Medicine is an inexact science, and it's constantly evolving. Its inexactness is its beauty. There's a lot of black and white, but there's a lot of room to grow. Years ago, people didn't survive polio and tuberculosis. We don't really see those diseases today. Years ago, people weren't six feet tall, and they didn't live into their seventies and eighties, or even their nineties, as many people do today. Thirty years ago, we didn't have breast cancer survivors. These days, a cancer diagnosis is rarely a death sentence. There's still no "cure" for cancer, but we're getting there.

Medicine is amazing. In this field, more than in any other, we have the ability to make miracles. Miracles happen every day. The best doctors are those who believe in the endless potential of medicine and in their duty to continuously educate themselves. I work at a hospital. I know that we lose good people every day, but I also know that the science of medicine can give life to those on the brink of death. Do you have "feel-good" stories at work? I have lots of them. I didn't write those, but I share them with others. That's my job.

I'm writing a story now. I'm writing the story of a little girl who deserves to live. She deserves to have everything I've ever had in my short life, all of the opportunities I've ever been given, and more. She deserves to see the blue sky and the blooming trees. She deserves to see the ocean when we go to the beach next month, not just feel the sand beneath her toes and the breeze on her face. She deserves to go to college and get married and have children of her own. She deserves to grow old with me. My little sister shouldn't die before me.

Right now, Batten Disease is a death sentence. Plain and simple. No child has ever survived Batten Disease. The fatality rate is 100%. I think that sucks. I think we have a chance to improve those stats. I believe that my little sister can buck the trend and become the first child to beat this disease from hell. Part of that's love. Part of it's fact. T has just a tiny bit of the enzyme most children with INCL are missing. It's keeping her alive longer than most. But she has more than a little bit of the enzyme; she has great courage. What cancer survivor hasn't exhibited courage? For that matter, what Batten child hasn't? They deserve our efforts.

Since July 24, 2006, my family has been on the train. Right now we don't know where it's going, but we think we can do something to chart its course. Anyone who doesn't believe that isn't on the train. Right now, we're holding out our hands for anyone who believes. We're here to share Taylor's tale, to spread it across the land, and to inspire others to help us save the lives of these children. We'll do that forever. We know we'll continue to come across new friends and supporters. Anyone who wants to join Taylor's Round Table will be welcomed with open arms. After awhile, though, you have to make a choice. Either you believe, or you don't. We didn't get that choice, but we're facing our challenge. We're daring it to take our little girl.

On Friday night, John, Dad and I took T to the Bobcats game. We had seats right down on the floor, and even though she couldn't see the game, T had a great time! She enjoyed listening to the music that played over the PA system and clapped whenever the Bobcats scored (which wasn't too often after halftime, but she was still a great cheerleader!). Towards the end of the game, she got to meet Rufus and get his autograph and a picture.

Yesterday, we went to Callie's for Mason's first birthday party. Mason's a bichon like Sunny, so it was a puppy party, which made it even more fun! Mason, Sunny, Daisy and Heisman, another fluffy white puppy who belongs to Callie's neighbors, had a great time and even got to enjoy a real puppy birthday cake from Canine Creations. While the puppies fought over each other's slices, we enjoyed another Jackson Pollock cake courtesy of Taylor and Callie (it really did taste good--especially with ice cream!). Who knew you could go through entire bottles of sprinkles and decorations for just two tiny cakes? :)

I'm probably beginning to sound like a broken record, but this little girl just knows how to make the best of the cards she's been dealt. She has an amazing attitude considering what she's going through. If I were going blind (not to mention all of the medicine she has to take, or the leg pain, or the headaches, or anything else), I'd be crying and screaming and generally going out of my mind. She almost always manages a smile and somehow finds beauty in the things she can still enjoy.