Friends have created a website as a tribute to their lovely daughter, who was diagnosed with Edwards syndrome shortly after birth. It also has links to information that they found useful. They hope that it will help other parents facing this devastating diagnosis. See ceryswatts.co.uk/
When DS2 was at preschool there was a little girl there who had edwards syndrome. Last I heard she was 4 and about to start school, I knew edwards syndrome was life limiting but I didn't realise it is rare for a child to live that long with the condition.