Carers speak out!

My child is to disabled for help

My son has a unique medical need he is the only child to have survived. This is something to be celebrated. In practice means he is not allowed to attend school, we cannot have respite (even though he has been assessed as requiring this) we have to rely on charities to help and support us because his needs are to unique for any statutory service. It feels like falling down a well and no one can help us get out. I understand that no one expected him to live but he has deserves to be supported