Wendy, who has Wolf Hirschhorn Syndrome, along with other young people and children is doing a sponsored disco dance at our biennial family conference in Northampton on Saturday 4th May. This is quite a challenge for a lot of them as it requires both stamina and continued engagement.

Wolf Hirschhorn Syndrome is a rare condition that affects childen in many different ways both mentally and physically. Some may never learn to walk or talk, many have feeding difficulties and most of them will need a considerable amount of care throughout their lives. If you have a child with a rare condition you can feel very isolated and the Trust is a great help in putting affected families in touch with one another so in a way we have a sort of extended family. It is very useful to know of other families who have faced similar problems and can offer help, advice and hope to newer parents. If you would like to know more about the condition have a look at the WHS website www.whs4pminus.co.uk.

 

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