Most parents will have anxieties when their child is born, but only in extreme cases would they ever worry that their baby might pass away. However, for the Bowyer family this fear is very real because six-year-old Sadie Bowyer has congenital central hypoventilation syndrome (CCHS) – an extremely rare condition that affects only around 1,200 children worldwide.
While she has perfectly healthy lungs, her autonomic nervous system doesn't function properly – meaning at any moment she can "forget to breathe". Every day is a minefield as even concentrating too hard can cause her to stop breathing, leaving parents Andrew and Sthar "scared".
Sthar, 48, told The Mirror: "She doesn't understand why she can't do a sleepover. She doesn't understand why she can't go swimming – she's got a hole in her neck, she can't go swimming. I can't just let her go with her friend for pickup for a playdate after school in someone else's car.
