introducing myself and son

Hi all

My name is Heike, i am originally from Belgium but now an Australian living in Sydney. I have three kids, two of which have a physical disability of unknown origin. It’s called HSP (hereditary spastic paraplegia) and we don’t know what type or why.
Our oldest was finally diagnosed with CIDP last year as well. At first, the doctors thought his HSP was getting worse as puberty hit, but then things went too fast and too far, and finally we worked out CIDP. The poor fella also has an intellectual disability, Bipolar disorder and Aspergers. Hence, it took a while to diagnose CIDP. He is responding well to IVIG but mentally is not coping too well with the long long road to recovery. He worked so hard as a kid to walk,and now he’s lost it all (he became a wheelchair user almost overnight in April 2014 and became totally incontinent, all while puberty was raging).

Are there any other people in this situation? Is there anyone else with CIDP based in Australia or even Sydney that we could have a chat with? I would love to be able to give my son some guidance as to how long recovery can take.

Thanks
Heike