Story By: Jonathan Macias, Sub Editor: Joseph Golder, Agency: Central European News
The mother of this girl who suffers from a rare illness which has seen her sleep for up to two months at a time has asked her local health service to help provide the food supplements that she needs to survive.
Sharki Tovar, 17, who has been dubbed ‘sleeping beauty’ lives with her mother Marleny Tovar in the town of Acacias in the Meta Department in the centre of Colombia where she suffers from the rare sleep disorder called Kleine-Levin syndrome.
Only around 40 cases have been reported around the world and her mother reports she even loses her memory after the sleeping episodes.
Marleny told local news outlet Noticias Caracol: “After a 48-day sleeping episode in June last year she lost her memory temporarily. She asked me who I was.”
The caring mother has asked the national health service EPS Capital Salud for the food supplements the teenager needs to be fed while she is sleeping and she has also requested urgent neurological treatment.
She told reporters: “The maximum she has slept was two months.”
According to Marleny, the health service has not supplied the supplements for two months and she has to prepare shakes herself to feed the girl while she is sleeping.
She told reporters in 2017: “Her food is all liquid, I cook and liquefy everything, I feed her every two hours, and I haven’t put a catheter in her because I am still able to feed her”
The family also requested a house from the municipality in November 2017 to live in as Marleny had to quit her job to look after her daughter and she cannot afford to pay the rent.
In November 2017, the Mayor of Acacias Orlando Gutierrez promised to give Sharik and her family a house, but that has not happened.
Gutierrez told Noticias Caracol he was busy on other matters, saying: “We are solving an issue related to the end of the construction with the underground tanks that we need to be able to store water”
According to Noticias Caracol, EPS Capital Salud in the Meta Department could not be contacted to be asked about the food supplements.
Kleine–Levin syndrome is characterised by persistent hypersomnia and cognitive or mood changes with episodes typically lasting more than a week, and sometimes for months. It is currently unknown what causes KLS, although the condition usually follows a viral infection.
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