Маленькая принцесса Машенька Кушнир больна страшным заболеванием Ретта

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Маленькая принцесса Машенька Кушнер больна страшным заболеванием Ретта1628089438

Rhett's Kingdom.
There was a king and a queen. And a beautiful princess was born to them. Tiny, fragile, delicate. The happy parents couldn't wait for their daughter. Mama couldn't be happy, and Papa was ready to lay the world at the feet of his princess! The little girl grew and developed, like all children, she started to walk and say her first words. But suddenly, after two years of age began a strange and incomprehensible - the princess is silent, her feet were walking with difficulty, her hands could not hold toys, and her eyes always looked at one point.
The doctors didn't know how to help, except for the usual set of pills. The princess screamed and cried very often and was silent... The king went off to seek salvation for his little princess and did not return... The queen was left alone with the sick princess...
Masha's fairy tale ended at 2.5 years old. This is the age when the first symptoms of Rett syndrome usually appear. Girls' disease or, as it is also called, princess disease (beautiful girls who can do nothing by themselves). Mom was very scared of her daughter's condition, but doctors only showed their hands. To all this the girl's breathing became abruptly bad - frequent and huge, followed by the first epileptic seizure. At three years of age, a genetic study showed that Mashenka had a rare mutation in one of the genes, and the disease only began to progress...
The king never came back... For four years this little family has lived in their own special little world. During this time, the disease progressed - attacks in Mashenka became more frequent and were accompanied by stops of breathing and bruising ... Legs and back of the baby, despite all the exercises, curved. The princess does not know how to straighten her body at all... All princesses have a throne... Masha has an old wheelchair instead. As it should be a princess, her mother carries her daughter in her arms - to walk from the fourth floor and Masha, and the carriage frail Anya carries herself (no elevator). Mom can not leave Masha even for an hour - only she knows how to cope with seizures. And running away, even for a couple of hours on their own affairs, Anya's heart is not in place - what if an attack happens and grandma can not get through, and she did not have time to come ...
That's how they live. There is no cure for the disease. It only gets worse with age.

Masha's mom smiles sadly: we have a diagnosis for princesses, although we do not live like royalty, on Masha's disability allowance we barely enough for diapers and a list of neurological and related drugs, which at least partially cure seizures.

Friends, we ask for your support and help for this little family. We will be with you, but we can not cope without you. https://vremya-dobryh.ru/masha-kushnir

Created: 04.08.2021
Updated: 04.08.2021
author
Head of the Charity Fund "Time of the Good"

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