💨 Abstract

The author shares her experience of caring for her 19-year-old son, Elijah, who has Apert Syndrome and severe disabilities due to a medical error. Despite having a funded care package and a team of carers, she feels overwhelmingly responsible and isolated. Her daily life involves managing Elijah's complex needs, coordinating carers, and advocating for his rights. The emotional and physical demands are immense, leading her to found Carers Collective, a charity offering support for parent carers.

Courtesy: Kaddy Thomas