Mum ‘reassured’ over vital drug access decision

Emily’s four-year-old son, Max, from Spinkhill, near Killarmarsh in Derbyshire, has CLN2 Batten disease, a rare degenerative genetic disorder that causes a decline in a child’s ability to walk, speak and see. He is symptom-free and has been receiving Brineura, the only approved treatment that slows the condition’s progress, since he was one.