@dmcj

What your dear daughter is suffering is indeed frightening.

The horrible truth is, it's when we (or our loved ones) most need help that we discover the limits of what doctors know and can do. This is especially true when the problem is rare and poorly understood.

Taking your daughter to Mayo is your path to getting the best help possible.

Of course you feel scared and desperate. But as you say: "there might be some hope."

Hang on to that hope! And please remember, we're here for you.