Son diagnosed with Rigid Spine Muscular Dystrophy- help!

Hi there

My son George, is almost 2, and has been diagnosed with Rigid Spine Muscular Dystrophy. I have fought for almost all his life to have him diagnosed, I knew what it was from very early on as I have two cousins with the same thing but was told no by the doctors as they couldn’t believe my parent would also be a carrier (as it turns out he is and I was right all along). I really need to get some help and support from others out there either with the same condition, those who have gone through the prenatal testing process or those with children diagnosed.

Out local physio team are woefully inadequate and have no idea what to do with George. They keep trying to fob us off and not see us and have refused to give him hydro. Having seen two family members grow up with the condition has made me very knowledgeable about it and I know full well when I’m being fobbed off or if someone doesn’t know what they’re talking about!

I would like to know what we should be offered, if we are entitled to any support and what I need to think about for George stating nursery when he’s 3. Also the process of having another child.

Any help would be very much appreciated as I’m feeling very alone at the moment.