With his spiky hair and Adidas sweatshirt, Shay Murray seems like the average 11-year-old. He’s cute, he’s boisterous, he’s into everything. But also, he has Pearson syndrome, an exceptionally rare mitochondrial disease that affects multiple body organs. His eyesight, hearing and memory are deteriorating, his kidneys are operating at barely 60%. It is incurable. Most kids while using condition die through the age of five.
I’m watching Shay play game titles inside of a big, bright social area on the Keech children’s hospice in Luton, where he is a frequent as well as enthusiastic visitor. “Whenever he comes here, I recognize the staff require a rest when he leaves,” says his father, Alan. “He’s a personality. In ways, the disability has produced him who he could be