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Tatarova Dasha, 7 years old

Date of birth: 11 August 2008.
The Republic of Mordovia, Atiurjevo village.

Diagnosis: Nephropathic cystinosis. This illness is incurable, but its progression can be prevented, if the girl permanently takes the medicines called Cystagon. The drug is very expensive, and each month the sum of RUB 100 000 should be spent to buy it. The Tatarov family will not manage to raise such a sum, as the parents’ income is not sufficient enough. We beg you to help in collecting RUB 248 220 to buy the medicine for Dasha for the next six months.
2 December 2015

Recently you have helped to raise money to buy expensive medicine for Katya Tatarova who is Dasha’s cousine. Now it is Dasha who needs your help. The both girls suffer from the same disease caused by gene mutation. The illness is incurable yet; but its progression will be halted and Dasha will regain her physical strengths, if she takes Cystagon regularly. The drug is not registered in this country, so it should be ordered abroad and be bought according to an exchange rate. The quota for this medicine could be achieved from time to time, not regularly. And after the exchange rate has increased, the government refused to supply the girl with the drug, because of lack of money in the local budget. It seems to be impossible to spend RUB 100 000 per a child each month.

If Dasha stops taking the medicine, the illness progression will accelerate. As a result, the kidneys do not function properly, neither do other internal organs; Dasha rapidly loses weight, becomes faded and inactive; her physical and psychological development slows. Dasha’s mother remembers what had her daughter’s state of health been like before the time when the illness was diagnosed and the course of treatment started: they brought to Moscow a weak one-year-old girl, whose weight was equal to that of a five-months-old baby. By her first year Dasha was not able to sit, to walk; she did not begin to speak, and was even breathing with a great difficulty – the girl was dying in her mother’s arms. The illness was not yet diagnosed in the family’s native region. Now the girl is not supplied with the medicine which she needs to live and grow up.

The beginning of this sad story is even more tragic.Dasha is not the first child in the family who suffers from this disease. Her parents had lost their first and their second daughters; it has been too late already, when they learnt about their illness. Luckily, now Dasha’s parents are aware of the medicine their daughter needs. But they have no opportunity to help her – the family does not have enough money to buy it on their own; they cannot wait till the local government provide them with the sum. They have no time, as the girl gets worth every day. We beg you to assist in raising money for Dasha, as you did for her cousin: please, help them buy for the girl the medicine called Cystagon for the next six months. It will give her a chance to carry on taking the course of treatment, and wait till the local government makes a decision on giving the girl a quota for the medicine in the future. The drug costs more than EUR 3 000.

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