Sleep is a top priority for most 11-year-olds. But it’s a matter of life and death for Liam Derbyshire, who has a rare condition that causes him to stop breathing every time he falls asleep, London's Daily Mail reported.
Doctors told Liam’s parents he would only live six weeks due to the condition called central hypoventilation – also known as Ondine’s Curse. But the remarkably active child has surpassed all expectations to make it to age 11 with the help of a life support machine – requiring his family to install emergency lighting in case of a power outage – that helps him breathe every night.
“Every day the doctors are amazed at how fit he is. He has defied all the odds,” said his mom Kim, adding that their family has to be extra attentive because his heart rate can slow at any minute.
Liam, who is in remission from the cancer he had as a child, wears a tracheostomy breathing tube in his throat at all times. At night, the Derbyshire family has someone look over Liam so that he has 24-hour care.
Liam was the first patient Dr. Gary Connett, of Southampton General Hospital in the U.K., diagnosed with central hypoventilation.
“I couldn’t find any reports of children who had all these problems and survived. It’s quite amazing. I would say he’s unique worldwide,” Connett said.