A young British boy has an incredibly unusual genetic disorder called Ondine's Curse, which means that if he falls asleep, he'll stop breathing.
By Linda Carroll
T
Twelve-year-old Liam Derbyshire has been beating the odds - and cheating death - for his entire life.
When he was an infant, doctors told Liam’s parents that the boy probably wouldn’t make it past six weeks because he was born with a rare condition called central hypoventilation, which makes it impossible for him to draw a breath automatically. That means that when he nods off, he could stop breathing.
So, each night Liam’s parents hook him up to a respirator that breathes for him once he drops off to sleep.
“You go from having a ***** who you believe to be normal when he is born to suddenly realizing that he has quite a catastrophic condition,” his mother, Kim Derbyshire, told TODAY.
The colloquial name for the condition, Ondine’s Curse, derives from a fairy tale in which the water nymph Ondine bewitched an unfaithful lover. He had sworn that his every waking breath would be a testimony of his love. When she learned of his unfaithfulness, she cast a spell that would make him forget to breathe if he fell asleep. When he eventually fell asleep out of exhaustion, his breathing stopped.
For Liam’s parents, the worry isn’t limited to nighttime. They have to watch him constantly to make sure he doesn’t get tired and nod off in a nap. When they go for a drive, Kim has to keep her eyes on the road – and on her son.
Liam has a permanent tracheostomy tube in his neck – which is where the ventilator plugs in at night. The family has spent thousands of dollars on electric bills and on the emergency equipment that will keep the ventilator running in case of a power failure.