27/02/2017 10:56 GMT

Husband With 'Sleeping Beauty Syndrome' Falls Asleep For Weeks At A Time

John only wakes for food and the bathroom.

A wife has told how she loses her husband for weeks at a time – because he suffers from a rare sleep disorder which causes him to fall in a deep slumber from which he can’t be woken.

John Flowe, 30, suffers from ultra-rare Kleine Levin or ‘Sleeping Beauty Syndrome’, a neurological disorder where sufferers sleep non-stop and wake only to go to the bathroom or eat.

Episodes can last for months at a time – but during all other periods sufferers have totally normal lifestyles. 

When federal government worker, Tara, 30, of South Carolina, USA, first started dating John around nine years ago, she thought he was not interested – because she would contact him and hear nothing back. In reality, he was asleep.

PA Real Life
John, here aged 21, with Tara, pictured nine years ago, on her 21st birthday.

“I couldn’t believe it when I found out,” Tara, mum to Camden, eight, and Caden, six, laughed.

“I thought he was ghosting me (when a date cuts contact suddenly) but actually he was asleep.

“When I found out I was gobsmacked.”

Tara met John, who now works for telecoms company AT&T, whilst at college and working as a waitress part-time.

“There was an immediate spark,” she said. “We hit it off and were soon a couple.

“He told me about his illness. He’d been diagnosed in his late teens, after wrongly being sectioned for a day by doctors who mistook his sleepiness for bipolar disorder.”

Six months after dating, in April 2008, they got engaged and shortly afterwards, in November, 2008, they were married.

Despite his frequent snoozing, Tara wasn’t worried about John falling asleep during the wedding.

At that stage, his episodes were infrequent and not that disruptive. As hoped, their big day passed without a hitch.

“I didn’t think John would fall asleep on our wedding day and luckily he didn’t,” said Tara.

At that stage, John’s KLS – as it is known – was happening only once every few years.

But, as time has passed and he’s got older, it has become worse.

PA Real Life
John with Tara and their sons, Caeden and Camden, at her sister's wedding, February 2017.

And while some doctors have suggested his KLS could have been caused by a flu-like virus, no one is certain why he developed it.  

Now he suffers an episode at least every year – and once fell asleep for extended periods seven times in one year.

Occasionally, he has confused recollection of some moments during his KLS episodes but, usually, he can’t remember anything.

“He’ll wake up and correctly say, ‘Did you get pizza?’” said Tara.

“Then he’ll ask if there were zombies there.”

John’s illness has also seen him miss important occasions.

He has snored his way through a number of his sons’ birthdays and yawned his way through Christmases in the past.

Despite this and Tara having to care for both him and the children when he’s asleep, she does not mind.

“It’s not his fault,” she said. “I love him and he did not ask for it.

“He’s not some drunk who sleeps and sleeps. It’s an illness.”

John last suffered an episode on October 30, 2016, for a number of weeks.

Tara said: “He had a slight warning, and suddenly he was out for the count.

“He slept through Halloween, but was awake in time for Christmas, thankfully.”

Because he has a slight warning an episode is imminent, John is able to alert his family and workplace - letting them know that he will be asleep for the foreseeable future.

“You just have to get on with it,” Tara said. “We still manage to enjoy ourselves.”
John, who has suffered episodes after having anaesthetic and drinking even minor amounts of alcohol, added: “It sucks having this illness.

“It is like being trapped in a nightmare and not being able to wake up. I’m trapped behind a glass wall. It takes over.

“It’s a rare disorder. I lose my life for months at a time. I don’t experience my kids, my wife. I’m there but not there.

“It’s hard on me but also my family. It takes a strong person like Tara to cope with it.

“But I am so grateful for Tara and my family for their support.”

The Kleine Levin Syndrome Foundation, which supports people with the illness, said: “Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder, characterised by recurring periods of excessive amounts of sleep, altered behaviour, and a reduced understanding of the world.

“At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), sometimes waking only to eat or go to the bathroom.

“Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. In between episodes, those with KLS appear to be in perfect health with no evidence of behavioural or physical dysfunction. KLS episodes may continue for 10 years or more.”

21 Rare Diseases