'Even the specialists hadn't seen my baby's condition before'

In the week of the awareness-raising campaign Rare Diseases Day, Sofya Court hopes the story of her son – born with a syndrome shared by only a few hundred people worldwide – will inspire others coping with obscure conditionsIt is 13 years since my son was born. His due date was 29 February, but he waited until the clock had tipped safely into March, guaranteeing him annual birthday parties. In the delivery room, the midwife whisked him off to be checked over: he was a good size, a h