In their first interview since Charlie’s death, the couple describe that David and Goliath struggle as ‘truly terrifying’.

‘I visualised Great Ormond Street as a big fish and Charlie, myself and Chris as tiny little fish,’ says Connie.

‘It was terribly intimidating and stressful to find ourselves up against such a powerful hospital and one which, in many people’s eyes, can do no wrong. It’s equally terrifying to realise just how easily the rights of parents can be snatched away.’