'They make him feel normal' – the role of video games in a children's hospice

With his spiky hair and Adidas sweatshirt, Shay Murray looks like a typical 11-year-old. But he also has Pearson syndrome, an incredibly rare mitochondrial disease that affects multiple body organs. His eyesight, hearing and memory are deteriorating, his kidneys are operating at barely 60%. I'm watching Shay play video games in a big, bright social area at the Keech children's hospice in Luton, where he is a regular and very enthusiastic visitor. "Whenever he comes here, I know the staff need a rest when he leaves," says his father, Alan. In a way, the disability has made him who he is – with the family sarcasm added on."