MORE ABOUT ANTOINÉ’S CONDITION

Congenital central hypoventilation syndrome (CCHS) is a disorder of the autonomic – or self-governing – nervous system that manages breathing.

Breathing, like heart rate, digestion and blood pressure, is a process that’s meant to happen automatically. In sufferers of CCHS the safeguards used by the nervous system to stimulate breathing, especially in sleep, are impaired and breathing is compromised.

There’s no cure for CCHS and it’s a lifelong condition. Treatment usually includes mechanical ventilation, which often requires a tracheotomy as in Antoiné’s case.

The life expectancy of people diagnosed with the condition at birth and who have adequate medical care is 30 and they can live independent lives.