Share your stories
Stories are written for and by people around a rare condition, so we know what we are ...
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Our Stories
We have selected parts from our library that are the most visited. Know that our library is growing and we are happy to add your story.
Introduction
Classic (or typical) CdLS can be easily recognised from birth by an experienced children’s doctor (...
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Resilience, coping with emotions
"When a child with handicaps is born," says Gwen Whiting, "the parents get to be in crisis for six weeks. Then they g...
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Age-related changes in cognition and behaviour
Research has suggested that behavioural, emotional and cognitive characteristics in CdLS can change with age.Find...
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Above all, share information and experiences with each other. Everyone has a little information and all these little bits become a wealth of information. Hugely valuable.
Raoul Hennekam
