Irina Krylova

Irina Krylova is from the village Prigorodnoye near Vyshny Volochek, Tver region. She is 37. She is raising alone two sons, aged 14 and 11 years old, the youngest son with cerebral palsy. To ensure the children she worked a lot as a saleswoman in a grocery store and as a social worker until she became ill. It was after a year and a half that Irene reached the specialists in St. Petersburg, who explained to Irina that she needed bone marrow transplantation to recover. The donor search in the international registry costs 18,000 euros. Irina’s page online of the fund AdVita is: http://advita.ru/IKryl1.php

- My family and I.  I have lived in Vyshny Volochyok since I was born, with my mother, in a two-bedroom apartment.  We live well, in close quarters, but it’s OK. Grandmother and I live in one room, and the children in the other room, which is a bit larger, so that they have their own space.

Daniel was born prematurely, at 6.5 months, and he suffered a stroke being still at hospital. The doctors tried to persuade me to abandon the child, they said I would regret it if I did not give him up to an orphanage. At first, I must confess, I was in panic.  And then I sat down and thought, " So what!  Could be worse". And I told the doctors that it did not concern them: it was my baby, no matter how ill he was, and I love him. I spent a lot of time with him, took him to procedures, when he was two years old he was diagnosed with cerebral palsy and was sent to Tula to be operated. Before that, he could not stand on his legs.  After the first operation he began to walk holding my two hands. After the second operation he was already holding one hand. And until now, we stay in hospital in Tver twice a year. His legs are bent at the knees, he walks on tiptoes, that's why he constantly stumbles and falls - this is now the main problem. Anyway, we are ok.

Vlad, the elder son, likes to draw anime, he has the entire wall covered with his pictures. And Daniel started to write only two years ago.  And he loves to read, Yesenin is his favorite poet. At five, he learned to read himself, and it is his passion now to sit in his room and read. Recently he came home and asked us: "So, will you buy me the book about Tom Sawyer as a New Year's present?"

I have not been working since summer, because I don't feel well, besides, I have to take the younger child to school, which is almost at the other end of the city, and we don't have a social taxi in the town.

- How I was looking for the doctor. Until 2013 I was fit as a fiddle, nothing disturbed me, sometimes I had headaches, as any person does. Then I worked in the social service, I helped thirteen old women, I did shopping for them, tidied up their rooms, took them to a bathhouse. I worked so for four years. And then everything went bad, I had pains in stomach, liver, spleen. In Volochek doctors couldn't not understand anything, I was sent to Tver, where I was told that I had cancer of the liver, "Go home, you have two weeks left to live.” In two weeks my friend Lena said," So, two weeks have passed. Why are you still alive? "She put me into the car and drove back to Tver. Somehow I was put in hospital, though there was a usual shortage of beds. And then the head of the department of gastroenterology assumed that I had a blood disorder. The same friend Lena took me to the Hematology Centre in Moscow, where I was diagnosed with "primary myelofibrosis." For a year and a half I was treated in Tver, and then the hematologist said: "I am not satisfied with your treatment, it doesn't seem to help. I advise you to consult in Moscow or St. Petersburg. "She gave me my medical documents and said, "Go."  I got out of the hospital and I stood thinking. I have a friend in St. Petersburg, and I asked her to help. She phoned the doctors, she was given the phone number of Shuvaev... I have forgotten his name... How ungrateful I am…[Vasiliy A. Shuvaev, MD, a leading expert hematologist of the Research Institute of Hematology and Blood Transfusion ].

Shuvaev examined me and said: "How were you treated?  How could you have lived for half a year with such a desease?”  I said, " Is the disease so terrible? " I was completely in the dark.  And he told me: "Well, actually it is not very good”... And he sent me to the Research Institute named after Raisa Gorbachev, he said that a bone marrow transplantation was absolutely necessary. At the Institute I was told so many things... I was sitting with my friend in St. Petersburg  for about two days and   could not accept this information.  I could not believe it...

- How I am treated. My sister was considered as a donor, but it is only half the solution, I have to look for a donor in the international registry. My coming to St. Petersburg is really like getting the jackpot! And for a year and a half before: take tablets - OK.  Don't know your diagnosis - OK.  It does not help - OK...

I come to St.Petersburg every month for the pills.  They should be taken for at least five months before transplantation to make the spleen smaller.  But they are very expensive! They began to make a quota for the medicine, I came with it to my hematologist in Tver, and she looked at me like, ' Irina, are you crazy?  Look what the prices are!  Here comes nearly a million. "It was the medication for just five months.  "No department will pay, I will not even submit the documents" - she said.  But I couldn't take it... "I'll go to the prosecutor and I will write a statement that you turned me down, write the failure," - I said.  She said: "Okay, okay, I'll take all the documents, but you know that they are accepted during a month, , they are considered for a week, then it will surely be a failure, because it is the end of the month." In general, I came home, turned on my laptop and immediately complained to my Petersburg doctor Yulia Vlasova. She figured it out and wrote to me later that I got the quota and that I should go and get the medicine in St. Petersburg. Last month I went there and received pills for a month. Now I will find out where to look for the next course, because I have pills for 3 weeks left, and before and after the New Year will be holidays. I have only time from 20 to 27th of December , because on December 27 I will run out  of pills.

- How everybody helps.  Everybody is doing their best to help. My mother works in a nursing home, the staff said they would collect money- at least a little, but something. My friend Lena works in the House of a disabled child, she is also collecting some money among the staff. The social protection might provide some help. All my friends are in the process - busy running around.  Although they have a lot of problems of their own, but they do not leave me, fine fellows.

Of course, we don't tell kids much about my illness, saying only that it is necessary to go to the hospital, that's all. But the elder son has read about it VK.com, came to his teacher and told her everything. I was asked to come to school next day, " Irina, tell me what happened? " I was scared, "What happened? "- " Here, your son said that you are sick.  Why have you not told us before! " And I'm not going to run around the city and shouting: "I'm sick!" They said that the teachers will collect the money, too...

- How I wait. It's a pity, there is no snow yet... Our favorite winter activity is tobogganing. And now on the New Year's Eve I want to take my sons to the bowling - we have never been there. I think: will Daniel be able to hold the ball?  I want it to be a surprise.