“I’m struggling right now,” Graeme Souness says quietly, his eyes swimming while he tries to hold back the tears as he thinks of Isla Grist, a 14-year-old girl from Inverness, and the stoicism she shows amid almost unbearable suffering. Isla has epidermolysis bullosa (EB), a rare genetic disorder which blisters half the skin covering her body. It does the same damage beneath the skin, tearing and ulcerating the insides of Isla so that there is never any respite from her pain.
I tell Souness that, before we began talking, I had been shown a few photographs of Isla’s legs. This was not done in a sensationalist or prurient way, but to help me understand what EB does to children such as Isla. Souness’s gaze glistens with distress when I say these images of devastation show skin that looks as if it has been burned.
