I'm in Australia too. I don't visit here that often but thought I'd drop in today. I'm near Newcastle in NSW.
It is pretty uncommon to run into someone else in Aus who has been through a similar case. I know there are quite a few out there who have but it's not that common to see in person.
I've been fighting this bloody thing for 13 years now. It's changed my life in more ways then I can explain. Some for the better, some not so. I would say my case is pretty extreme to most but some have it worse. I did come close to being one of those who could have lost their life to it but I'm still here kicking along.
My biggest hatred of this damn thing is I've passed the gene on to my daughter. She too is now having issues and thankfully we go it before it progressed too far. It damn well brings a tear to my eye every time I think about it. She is such a tiny little girl and this is the last thing she ever deserves. She started school this year and it is great that her teachers are treating her well and making sure she can hear what they are saying. They are teaching the class sign language which she is also teaching me as she goes.
I find it hard to deal with, even after all this time. If at ever you wish to have a chat, feel free to get in touch.