'She thinks she is Sleeping Beauty': 11-year-old girl sleeps for 16 hours a day

August 7, 2017  21:53

A 11-year-old girl is convinced she is a real-life Sleeping Beauty - thanks to an incurable neurological disease that causes her to sleep at least 16 hours a day.

Jade Frazier, of Beaver Dam, Kentucky, has suspected Kleine-Levin Syndrome, a rare disorder that leaves sufferers desperately tired and causes them to fall asleep regularly throughout the day.

The incurable condition—also known as Sleeping Beauty Syndrome—means Jade, who has permanent black circles around her eyes, has to take four naps a day, otherwise she risks falling into a totally incoherent and dazed state.

Jade's illness impedes on her life so much, it once caused her to sleep for 20 hours straight through Christmas Day and miss out on opening her presents because she was so groggy.

The syndrome is a 'rare and complex neurological disorder', the cause of which is unknown, according to the Kleine-Levin Foundation.

It is characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world.

At the beginning of an episode, the patient becomes drowsy and sleeps for most of the day and night.

Some sufferers spend days, weeks or even months in periods of deep sleep, waking only to go to the bathroom or to eat.

Jade's mother Dee Frazier, 36, a waitress, said her daughter falls asleep 'all the time, anywhere', adding that Jade can't take any kind of stimulants to try and combat the issue, because the syndrome also causes hyperactivity and irrational behavior, and the medication could make it worse.

'She definitely sleeps more than other children and she misses out as a result,' the mom said.

Dee first noticed something was unusual about Jade's sleeping pattern when, as a newborn baby, she stayed asleep all night.

But the mom, who also has an older son, just assumed the tot—who was born prematurely at 34.5 weeks—was a 'good' baby.

'My 12-year-old son JD hated naps but Jade loved them,' she said. 'I didn't think there was anything weird about it.

'It wasn't until she started sleeping a lot at school that we started to worry.'

Jade's daily three to four naps can last from 30 minutes to half the day; her disorder also causes developmental delay and stunted her language.

According to her mother, Jade has the mental age of an eight-year-old, and if she isn't able to have a nap, she lashes out and becomes aggressive.

'It's almost like a two-year-old having a meltdown,' Dee said. 'She might stick her tongue out and she will take her shoes off and throw them across the room.

'Once she's asleep I don't wake her up because she gets so upset. I know it will be more beneficial for her if I let her sleep.'

Jade's refusal to wake up on Christmas morning is what prompted doctors to say she likely has Kleine-Levin Syndrome.

There is no specific way to detect the condition, but medics have performed tests to rule out other illnesses.

'She didn't want to open her presents because she wanted to sleep and that's not like a normal girl her age,' Dee said. 'We are Christian so we do the tree and presents and turkey and she didn't want any of it.

'It was really hard. That was the first real moment where we were like, "Hey, there really is something going on here, this is a bit much."

'She also fell asleep at the water park once. We were in a wave pool and she said, "Momma, I need a nap." We had to get out and she fell into a deep sleep.

'There were people her age who looked at her and were laughing and one boy said, "Look dad, she is sleeping. How funny is that?" '

Understandably, Dee worries about Jade's future and fears her daughter may never hold down a job.

'It doesn't matter where we are. She suddenly gets really really tired and her eyes sink in,' Dee said of her daughter.

'She loses all her energy. Then she will put her thumb in her mouth and she's out.'

Jade sleeps at least 16 hours a day on average and is stuck in a dream world, thinking she dozes off so much because she is like Sleeping Beauty in the Disney fairy tale.

'She loves Disney and Sleeping Beauty is one of her favorites, so she will say, "Well that must be why I like sleep so much,"' Dee added. 'But it is not a fairy tale.

'As a mom it is hard. I will see photos on Facebook of different moms and their kids Jade's age doing ballet and things like that. But if she tried to do those things, when she got back she would sleep forever.

'My heart breaks for her because she is not experiencing what a normal 11-year-old should be experiencing.'

 

 

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