Do you know Taylor, or are you the relative or friend of another child with Batten Disease? Has the disease touched your life in some way? This e-mail address is being protected from spambots. You need JavaScript enabled to view it with your thoughts, past encounters with Taylor, happy stories or memories of children affected by Batten Disease, or how you've been a part of Taylor's Tale. You have all touched us in some way! I'll share some of your responses here on my blog; when you contact me, please let me know if you don't want your message posted on the Web.

The Batten Disease community isn't one we signed up for, but we're part of it just the same. Some days--many days--I'm angry and don't want to be a part of it. On those days, I have to remind myself that it's okay to say, "This sucks." On those days my mood borders on denial, but it never gets to that level. I've never actually tried to deny the reality of Taylor's condition, not even from day one. I've just set my mind on the fight. I won't listen to any odds. I'm only fighting for tomorrow, and the next day, and the next. There's a light at the end of the tunnel. There's a cure in that haystack. We're just racing against time.

It's amazing how much your world shrinks when someone you love is affected by a rare disorder. It's helpful to be able to share this experience with others who've been dealt a similar card. I say "similar," and not "the same," because one thing I've learned is that each family's experience is singular. No two children are the same, just as no two families and no two journeys are the same. But it's not just Batten parents and grandparents and siblings who stay in touch...it's also people on my street and in my hometown and thousands of miles away--on the other side of the world, even; it's friends, but it's also perfect strangers who became friends through a tragic yet inspiring story of a little girl with a lot of spunk--and a fledgling non-profit that refuses to let these kids go down without a fight.

I look forward to hearing from you! Please also remember to sign up for our email newsletter, which I hope to have launched before the year's out. Just enter your email address in the box at the bottom of any page on the site. And look out for a new feature on the site in the coming weeks. Sooner than later, online giving will be enabled on www.taylorstale.com, so supporting the search for a cure will be easier than ever. Let me know if you have questions!