Her son, Isaac, eight, had CLN2 Batten disease diagnosed in August 2021. It is an incurable condition which causes childhood dementia, epilepsy and loss of sight. Ms Tilley said: "It is agonising.

CLN2 Batten disease, external is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. Phoebe, from Coventry, said daughter Flory's doses of Brineura ...

Two years ago, Beatrice Cieslik was diagnosed with CLN2 type Batten disease - a rare degenerative condition which causes seizures, blindness, dementia, and difficulty with mobility and speech.