I am mum to George, a teenage lad with a muscle wasting condition called Duchene Muscular Dystrophy. DMD is progressive and therefore the level of care he needs increases every year. We had some struggles with schooling but have been lucky to have an experienced and diligent team of health professionals on board.
As a carer I have endeavoured to keep working part-time but often feel pulled in two directions (time off for appointments, paper work, EHCP meetings, wheelchair assessments, splints). It is upsetting that he is not able to hang out with boys his own age and is losing his independence as his peers are increasing theirs. I would love for him to be able to access a suitable youth club.