It's been four years since Connor Prince has seen Christmas.
The reason? He's been asleep.
The 12-year-old boy from Nottinghamshire, UK suffers from Kleine Levin Syndrome, an extremely rare sleep disorder that leaves him asleep for great lengths of time.
These days, Prince sleeps for months at a time, waking only for a few short minutes each day.
As such, his family didn't expect him to be awake this Christmas—but in something like a Christmas miracle, he awoke just in time for the festivities.
His mother Dana Prince explained her frustration to Metro.uk:
"The last three years have put such a strain on the family, as we haven’t been able to plan any holidays.
I’ve had to give up work to look after Connor. Connor is sleeping through months of his life and special occasions, like Christmas.
It’s heartbreaking to watch."
She continues, lamenting all the moments he's missing in his own childhood, and how surprised the family was when he awoke for Christmas:
"This year he slept through Halloween and Bonfire Night and we thought we’d lose him for Christmas.
But he woke up – we were over the moon! He even stayed awake long enough to play chess on his specially designed Harry Potter board."
Prince was sick throughout much of his childhood; at various points he contracted measles, mumps and tonsillitis.
But at age nine, after the bout with tonsillitis, he slept for a week—and neither Dana Prince nor Prince's father Andy Gough were able to wake him.
At first they thought it was he was simply sick and recovering, but in November 2012, Connor fell asleep—and didn't awake fully again until January 2013.
He'd wake for a few minutes each day, when he'd eat something or use the bathroom, but he was always confused and seemingly not fully conscious.
His mother explains:
"When he’s in sleep mode, I can’t get him dressed for love nor money. When he’s awake, but still in sleep mode, he looks like he has a hangover. He’s completely dazed and confused. He rambles and talks to fresh air. We’ll start to engage him in conversation and he’ll talk about random things.
She also says that Conor's waking sleep state can be dangerous:
“He’ll do things in his sleep and not be aware he’s done them. Once he opened the front door and walked into the street.”
When he awoke in January 2013, Connor had no idea he'd slept through Christmas.
The family's GP told Dana that Conor likely had chronic fatigue syndrome and had to be forced into waking when he was asleep, but the concerned mom felt there was more to her son's condition than that.
She started taking note of her son's condition on days before he fell asleep, realizing that on those days, he'd often complain about sore limbs and a greatly increased appetite.
Scouring the web for diseases with such symptoms, she eventually discovered the sleep disorder Kleine Levin Syndrome—a rare neurological disorder that affects only 1,000 people in the world, and has no known cure.
Dana then went back to their GP with the news, asking that her son's notes be sent to the sleep clinic at Nottingham City Hospital.
His condition was diagnosed immediately as Kleine Levin-Syndrome.
"It felt fantastic to get a diagnosis. But it’s a bitter pill to swallow, because you don’t want your child to miss large portions of his life and we know how hard it’s going to be for him.
What upsets Connor is the bits that he misses, he feels so isolated and alone. He’s losing so much for his life, it’s devastating. I desperately hope he’ll grow out of KLS. I’ve heard of people who still have it in their twenties and thirties and have never had a normal life."
As for now, the family says they're taking each day as it comes.