The hunt for a diagnosis lasted a year and eventually after months of blood and genetic testing, the family were summoned to St George’s Hospital, in south-west London to be told the results. ‘‘It was the worst day of our lives,” he recalls sadly.‘‘And the experience was bizarre. There was Harrison, playing with his toys on the floor, loving life, excited to be at the hospital. And the consultant was telling us that he had Duchenne’s, that he was going to die and medicine had nothing to offer him. Time really stands still in a moment like that.