Hi Lostboy, and welcome to Neurotalk. I've been recently diagnosed with a neuromuscular condition myself, after living with it for six years. But I haven't had the time yet to read up on the condition and learn what it's all about. I especially feel bad that it's your little girl who is so ill. I know that this must be a lot worse than if you were ill yourself, and my heart goes out to you. I hope very much that you will find some good answers for your daughter, and if I find anything which might help you I'll be more that happy to pass it on. Good luck, Lostboy, and all my best wishes.