Guiding parents through the diagnosis and management of rare and devastating conditions is difficult and draining. Perhaps the most tricky question to tackle is “why us?”. Most people are unable to assess probability and, even if they can understand how often in the population an event might occur, this rarely translates into an appreciation of the chances of such an event happening to them.1 The rarity of such an event makes it difficult to believe and make sense of why it has happened to any one individual.  Having been a consultant paediatrician for ten months, …