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So my next door neighbour"s son who is the happiest and most loveable boy  has now been found to have San Fillipo syndrome.This is a  muccopolysacharidosis.This effectively means that waste  materials build up in cells resulting in progressive dysfunction and general disabilty.I cannot imagine  how his parent"s must feel knowing what the future may hold for him.He will need a huge amount of practical  support over the coming years.Research goes on to find effective treatments for the condition.The MPS is key to all of this and I will run an arduous off road marathon around the Eden project in Cormwall and hope to raise some money to help. Daniel I shall hope for one of your huge welcoming cuddles on my return!

Damian.