For children facing life-limiting illnesses, adaptive technology allows them to feel independent and express themselves
With his spiky hair and Adidas sweatshirt, Shay Murray looks like a typical 11-year-old. He’s cute, he’s boisterous, he’s into everything. 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%. There is no cure. Most children with the condition die by the age of five.
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. “He’s a character. In a way, the disability has made him who he is – with the family sarcasm added on.”