I have a son who was born December 2006 and has been diagnosed with Ullrich Congenital Muscular Dystrophy.
I am posting this note to say that you can contact me via telephone at any stage to discuss anything you want. I have been through the part of talking to others and have developed a relationship with another family in Sydney, Australia who has a son with the disease. I know how hard it was to make the initial phone call to a total stranger and open up about your problem so please feel free to contact me at any stage.
I live in Hobart, Tasmania, Australia and can be contacted on either 03 6249 9337 (home) or 0438 502 178 (mobile). Alternately you can contact me via email on my home email address mick_kylie@iprimus.com.au or my work email address michael.peters@hazellbros.com.au

Regards