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They never come on the good days. The times when her sister is happy and full of smiles, eager to read stories and be entertained by puppet shows and games. On these days there is simply no time to give it a second thought. But, on the days when Tatyanna is quiet, her smiles wan and tired, she asks.

"Why?"

"Why does Tatyanna have to have Battens?....Why don't I have Battens? If I had two little pieces, would I be like Tatyanna (our way of explaining autosomal resesive genetics to a 5 year old) What if her brain wasn't sick? Why can't the doctors just fix her? Will she ever be able to walk and talk again?"

We answer her questions as best as we can, knowing that it's only a matter of time before she will ask again. After all, there is no good answer. Nothing to make the understanding any easier.

And so, we encourage the kids to keep asking questions, to never accept "what is" and to always hope for something better. A cure will be found and someday no family will ever have to face the horror of Battens. I believe this with all of my being. But that cure will only come because people continue to ask, "why".