Mother describes raising daughter with ultra-rare RARB genetic disorder

Christelle Randall describes raising Elsie, born in March 2025 with a mutation in the RARB (retinoic acid receptor beta) gene, a condition with fewer than 100 known cases. Elsie is legally classed as blind, has episodes where she stops breathing and developmental delay, and spent most of her first eight months in hospital. It is a first-person account of her family's experience. Source: the Guardian