PARENTS

Boy Whose Sleeping Disorder Means He Sleeps For Months Spends First Christmas Awake In Four Years

He can sleep for up to four months.

29/12/2016 10:05

A 12-year-old boy who sleeps for three and a half months at a time has celebrated his first Christmas awake in four years. 

Connor Prince, from Toton, Nottinghamshire, has Kleine Levin Syndrome, an unusual sleep disorder, which can see him snooze for months at a time.

Tragically, the condition affects him all year round and there is no way to prevent it.

Connor has slumbered through the past four Christmases but miraculously managed to stay awake this year.

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His stay-at-home mum Dana, 44, said: “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 heart-breaking to watch.

“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.”

Connor had always been a sickly child and in the first few years of his life, he contracted measles, mumps and tonsillitis.

At the age of nine, after a bout of tonsillitis, Connor slept for a week and Dana and his dad, Andy Gough, 36, a manager at a local engineering firm, could not wake him up.

The family thought it was just because of the infection, but in November 2012, Connor fell asleep and didn’t wake up until January the following year.

Dana tried to wake him for Christmas, but Connor wouldn’t stir.

Each day, he only managed to stay awake for a few minutes, to go to the bathroom or drink a nourishment shake, but he was very incoherent and confused.

Dana said: “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.

“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.” 

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When he finally woke in January, Connor had no idea that he had slept through Christmas.

From then on, every few weeks, he fell asleep for a couple of days or more and Dana took voluntary redundancy as a lecturer in September 2013 to look after him.

Her GP advised her that Connor had chronic fatigue syndrome and needed to be forced awake, but she suspected that there was more to her son’s problems.

She said: “I can tell the difference between when he’s in his sleep mode and when he’s simply tired.

“When he’s tired, I’ll get him dressed and brush his teeth and he’ll go to school.

“When he’s asleep there’s no way of getting him out of bed.”

Soon, Dana noticed a pattern in Connor’s habits.

Days before his ‘sleeping episodes’, his appetite would increase tenfold and he’d complain of aching limbs.

Then, in December 2014, Connor fell asleep for Christmas for the third year running.

Dana roused him briefly on Christmas Day and took pictures of him with his dad and granddad, wearing matching jumpers, but he nodded off a few hours later.

And when he awoke in January, he had no recollection of Christmas Day or of taking the pictures.

Frustrated, Dana fought with Connor’s school, as they insisted he attend class.

She often sent Connor to class only for him to fall asleep mid-lesson.

Meanwhile, she continued to tell his GP that she believed Connor’s condition was not just chronic fatigue.

She said: “In the past few years, his mood swings have been terrible.

“He’s down, he’s depressed – he thinks nobody loves him, believing that even our five dogs don’t like him.

“For a mum to hear that is heart-breaking, and for him to say to a doctor that his mum doesn’t like him is awful.

“When he’s out of sleep mode, he won’t remember saying it.

“When he’s well, I have my child back again.”

Finally, in July 2016, after Connor fell asleep for a fourth year during Christmas, Dana came across the sleep disorder KLS on the internet after she started researching his symptoms.

The rare neurological disorder affects just 1,000 people worldwide and has no cure.

“He’d been diagnosed with chronic fatigue but I knew his symptoms didn’t fit with that,” she explained.

“I researched sleeping disorders and came across KLS and it just fit Connor.”

After the revelation, Dana went to see her son’s GP again.

“I asked his doctor to send Connor’s notes to the sleep clinic at Nottingham City Hospital and he was diagnosed straight away,” she said.

“The symptoms for chronic fatigue and KLS are so similar.

“Chronic fatigue is common in young adolescent boys and KLS is so rare – I think that’s why Connor wasn’t diagnosed properly the first time.

“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.

“This will be life-changing for him, and for me because I can’t go back to work full-time.

“Connor no longer feels like we’re nagging him to get out of bed. Now we can deal with his condition more appropriately and I don’t feel quite as guilty when he’s asleep.”

This year, Connor slept through Halloween and Bonfire Night, but Dana was relieved he stayed awake for the festive season. 

She added: “What upsets Connor is the bits that he misses, he feels so isolated and alone.

“When he sleeps we hibernate as a family as well. 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.

“We’ve got to take each day as it comes.”

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