Kate - I was very moved by your story. Like Sara, I felt the need to reply.

I wish I could give you some helpful advice. I do not believe in dead ends. I noticed in your signature that you are in Melbourne and as such, you would already have access to many experts in this subject. The only thing I can think of is to ask if you have tried other neurological and genetic doctors in Sydney or even further afield?

Kate, I truly admire your determination and clear-mindedness. I hope you are able to get to the bottom of this so you will have the option and opportunity of having children should you want to, in the future.

WTH xx