— 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 child 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.
Liam’s medical problems aren’t limited to his breathing condition. He’s also had to battle cancer and a bowel disease in his twelve short years.
But in spite of what he has been through, his family says Liam has "exceeded all expectations." As Kim told the Daily Mail: "Every day the doctors are amazed at how fit he is. He has defied all the odds. We have been very fortunate with Liam that he has had the life that he's got. We always wanted him to have as normal a life as we could give him."
His family tries to enjoy every day with Liam, who has a passion for trains and hopes to be a train conductor when he grows up. Every Christmas, Kim says, is a bonus.
"He is so full of life, he's fantastic. He's constantly smiling and laughing. He's very affectionate. He has all the normal traits of a lot of kids," Kim told the Daily Mail.
“If it were going to happen to anyone,” Kim adds, “he’s the best person for it to happen to because he’s just gone with it."