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Kozlova Sophia, 4 years old

Date of birth: 16 March 2011.
The Chuvash Republic, Cheboksary.

Diagnosis: Congenital Vascular Malformation (CVM) of the left side of the face. The girl desperately needs to take medicine ‘Rapamune’ for a long time. It costs RUB 158 400. Her single mother does her best to bring up three children. She will not manage to raise such a sum on her own. But you have given her a helping hand. Thank you very much!
29 October 2015

Dysplasia refers to an abnormality of development of some tissues or organs. In Sophia’s case, it is the vassals of the left side of her face which are abnormally formed. Hence, her skin looks blue, which resembles a huge bruise; she can hardly open her left lid; and, which is more, she has a problem with her eyesight. The girl has been undergoing a number of various courses of treatment since the time she was born. Just think of a necessity of spending three hours each day with your right eye closed to make the left one function! It is a great pity that the treatment methods which had been recommended did not worked so far. Unfortunately, none of them have managed to improve the situation: neither the appearance nor the state of health got better.

Lately the board of doctors came to the conclusion that all appropriate measures have already been introduced: physiotherapy and taking drugs were not effective; the operation cannot be carried out, because of a young age of the patient and a large amount of an abnormal tissue. Thus, all methods which are available in this country have been applied. No results. Nevertheless, the doctors do not give up: taking into account the experience that their foreign colleagues have in the field, they recommend that Sophia should take medicine called ‘Rapamune’. This drug is able to halt the progression of the illness, and after that Sophia could undergo the operation.

Here a question may arise: why the medicine had not been prescribed earlier, if it may be so effective. But if it had been done, that would have meant to make the girl and her mother find themselves face to face with the illness. The medicine of this kind is not provided gratis by the government. It will cost RUB 158 400, which the family cannot afford. The doctors were trying to help the girl with the possible means, but they cannot rely on these any longer.

Last six months Sophia’s mother has spent in vain attempts to find support for the purchase of the drug at the Department of Health. The girl has not been getting help for half a year already. But if she had got it, her state of health would have improved be the present moment. Her mom has no possibility for buying the medicine: the family is on benefit since she lost her husband in March 2014. It is a terrible ordeal to have three children and have no chance to find job because of the necessity of taking care of a sick child. We beg you to help Sophia continue the treatment. She would have no chance to beat the disease without your assistance!

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