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A.J. Haywood

Medics seek cure for one-and-a-half year old 'Sleeping Beauty' girl who hardly wakes up

By The Siberian Times reporter
05 June 2017

Doctors say little Anya is 'healthy' but she sleeps for days at a time; they cannot find any abnormalities to account for her condition.

By seeking publicity for her case, the family hope experts will come forward who understand her condition and can offer advice to her doctors. Picture: Ural Media Holding

Anya one day first fell into a long sleep aged around six months as she had her lunch. She dozed off in her chair, and didn't wake for almost a week. 

The day after she fell asleep her worried parents rushed her to hospital - and for a year or so she has virtually lived there as medics struggle to explain her condition.

Mother Alexandra Metyolkina said: 'How can you not think about the Sleeping Beauty fairy tale? A princess fell asleep there - and no one could wake her up.

'But our Anyutka (Anya) didn't prick her hand. I was feeding her, and all of a sudden she fell asleep.' 

sleeping beauty


sleeping beauty


sleeping beauty
'The medics established that Anya's heartbeat and breathing dramatically slow down when she sleeps.' Pictures: KP, Ural Media Holding


Alexandra said: 'At first I was afraid she was in coma, but doctors assured me that my little one was sleeping.'

On the first visit to Pervouralsk Children's Hospital, she woke suddenly and made clear she wanted food. 

'We took her home, but next day she fell asleep again and we couldn't wake her,' Alexandra said. 

For the past year, there pattern has been that she sleeps for days on end, and wakes for only a few hours. 

'It is not coma, it's normal sleep,' said her mother. 'We are now practically living in reanimation.

'After sleep she has fever, her face turns red, and she starts shivering.'

sleeping beauty


sleeping beauty


sleeping beauty


sleeping beauty
There is a condition called Kleine-Levin Syndrome (KLS), a rare and complex neurological disorder characterised by recurring periods of excessive amounts of sleep, altered behaviour, and a reduced understanding of the world. Pictures: Ural Media Holding


Doctors are keeping her in hospital to monitor her, and in the past year she has spent only four nights at home in Pervouralsk, near Ekaterinburg, in the Urals.

Anya's diagnosis is 'Hypersomnia of unclear origin' - in other words, doctors say that she sleeps too much but do not understand why yet. 

'The medics established that Anya's heartbeat and breathing dramatically slow down when she sleeps,' said Alexandra. 'But no one can explain us why that happens. 

'Doctors are telling us they don't know what's happening to Anya. 

'At first they thought she's suffering from meningitis or encephalitis.

'But checks suggest that her brain and nervous system are fine.

'Then they thought it could be because of problems with heart, but it turned out to be normal.

'There have been dozens of other checks, including those on genetic diseases, but all the results came negative.' 

She said: 'Doctors came to the conclusion that it is a beginning of epilepsy. But the tests have not proven this.'

Pervouralsk Children's Hospital, Pervouralsk, Kleine-Levin Syndrome


Pervouralsk Children's Hospital, Pervouralsk, Kleine-Levin Syndrome


sleeping beauty
'Sleeping beauty' Anya with mother Alexandra. Pictures: KP, Ural Media Holding


It is impossible to wake the girl when she is asleep. She does not go to the toilet, nor eat or drink.

Her pulse slows, and temperature falls to 35C from a normal of 37C.

By seeking publicity for her case, the family hope experts will come forward who understand her condition and can offer advice to her doctors.

There is a condition called Kleine-Levin Syndrome (KLS), a rare and complex neurological disorder characterised by recurring periods of excessive amounts of sleep, altered behaviour, and a reduced understanding of the world.

'KLS robs children and young adults of big pieces of their lives, one agonising episode at a time,' says website http://klsfoundation.org/what-is-kleine-levin-syndrome/.

This condition appears to be far more prevalent in males than females, and exceptionally rare among children as young as Anya.

'The cause of Kleine-Levin Syndrome is not known,' states the website.

Comments (18)

Merci de transmettre ce message à la famille de Anya :
bonjour, je propose mon aide à Anya, je suis biodynamiseur, je travaille sur les corps subtils, j'aimerai essayer un travail à distance, il me faut une photo de Anya seule et entière, une mèche de cheveux ou un bout d'ongle, l'accords par écrit des parents qui m'autorise à travailler sur leur fille Anya pour lui faire du bien avec sa date et son lieu de naissance. Je précise que je ne demande pas à être payé. Je vous donne mes coordonnés Eric Esnault Ralay 53170 BAZOUGERS France
eric esnault, france
08/06/2017 02:50
2
6
Possible narcolepsy or a varient?
Edward Jennings, Prescott, Arizona, US
06/06/2017 12:05
3
1
Can someone help?
Jean, Prague
05/06/2017 21:22
1
0
12

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