I fit here and not anywhere else lol so I thought I would share something for others who have family with Dystonia.
My bro was 3 months prem, weighed not quite half a bag of sugar and prognosis was slim. He is now a 6 footer, is dx with OCD & after years of thinking parkinsons was dx with Dystonia quite a few years back now. He hasnt let it stop his goals and aims at all. He was a total school refuser who couldnt cope in school when he was young and spent most of it under the table lol even private didnt help. But he left school and passed all his exams on his own. Took mechanics course which would take the best person 2.5 years to complete each set and passed with 92% and 100% on each paper within 6 months flat. He has been on the lifeboat and even with cracked ribs he still went out and rescued, he has been a coastguard rescue and can build a computer from wires lol. He is now 42 and apart from bike racing and hill climbing he was a great fisherman till the illness stopped it due to balance. Has turned into an amazing photographer.
Now he is aiming to complete a 2hr Enduro on a quad bike early next year for the Dystonia Charity. He is trying out on a funduro this weekend to see if his body will take the bashing.
I guess I want to say whatever doubts you have for your children anything is possible even when you have been told it wont be. PLUS please keep your fingers crossed that he can withstand the funduro because he is going to be gutted if he cant do the charity one xxx