It is difficult to explain what it is like to live in a family where a child is gravely ill. But anyway I'll try. When Nastya was born in August 1987, she had to undergo a grave operation the second day after her birth. Then she spent 23 days in the resuscitation ward. But I prayed that God would let my daughter stay with me, and she survived. When Nastya was 3 months old, we returned home, and our difficult everyday life began. During the "perestroika," it was almost impossible to buy not only good enzymes but even simple medicines, which Nastya had to take in dozens. But she was still alive, in spite of all prognoses.

Then another trouble hit us. Nastya's father could not bear all the hardships and left us. I had to raise two children (Nastya and Kirill, my son, who was 8 years older) all by myself. It was at the end of 1991, when the last Soviet roubles were depreciated. I was alone, without money, without help, but with my children. I could not search for a permanent job, because Nastya needed serious everyday care. So I managed to earn something from time to time and raised the children. Thanks to my watchful care, Nastya grew up almost at the same rate as other children of her age, but still the disease had its effects, and the doctors from Irkutsk, our native city, advised us that Nastya should be treated in Moscow. But journeys to Moscow, which is 5000 km from our city, were very expensive. I tried to get a well-paid job, but nobody wants to employ a woman with such problems as mine. This is the way we lived until Nastya was eight. Then I found a job at an airport: three days and nights with Nastya, with her pains and concerns, and one day and night at work. The girl is smart, good at schooling, but her main hobby is handiwork. She excels in embroidery and beadwork.

But again a terrible thing happened in our family: not just trouble but a great grief. My elder son suddenly perished when he was 16.5 years old. I just don't know how I managed to bear this. Maybe only the thought that I am responsible for Nastya gave me some courage.

Since 2000, I have been taking Nastya to the RCCH for treatment. But now, in her teen-age years, the disease exacerbated.

Nastya is well aware of her condition. She knows that many of her comrades suffering from the same disease are no longer alive. But she still hopes for help. She constantly needs expensive medicines that are not available in our city.
But what Nastya needs most is a portable oxygen concentrator. It costs more than 3000 USD, and I can't buy it myself. I asked for financial help at my job but received a refusal. We can only hope that some kind and generous people will be touched by our trouble.

Please help us!

Yours respectfully,
Oksana Mikhailovna Zhiltsova,
city of Irkutsk