• CCHS, Press, Rare Diseases
• December 26, 2022

It is 10.30am and Casper Oakley-Roberts smiles as his parents finish feeding him spoonfuls of apple purée and prepare for his first nap of the day.

They carry him into his room and put him down gently. Then one of them holds his hands out of the way as they strap a ventilation mask to his face.

Casper, who turned one this month, is one of 1,500 people in the world with congenital central hypoventilation syndrome (CCHS), a neurological condition that means he can suffocate at any time if he falls asleep, concentrates too hard or even just gets upset. There is no cure or treatment, beyond artificial life support.