Translated material
Russian Zen
In May 2018, Kirill Aleinikov found a bone marrow donor. For six months, she and her mother spent in anticipation of the operation - she was constantly transferred. So far, in the end, they have not reported that there would be no transplant - "the donor has a honey carrier, possibly for a lifetime." Now Cyril is back in line
Helping not to helpSurvival simulator
I go into the room and stretch out the book of the Sad Facts about the Cubs of Animals that has buried in a computer monitor of 16-year-old Cyril. The teenager puts her on the shelf with the words: "Thank you, I'll see someday!" He does not want to be distracted from the online game Rust. This is a survival simulator where you find yourself naked on the island. The goal is to find resources and survive. The computer does not help you, but about once a day tries to kill you. It is not very different from life in Russia.
The life of Cyril and his mother Tatyana for the past eight years is also similar to the survival simulator.
Kirill photo: Vadim Brydov for TDAt eight years, the boy caught a cold, and after recovery, the doctor drew attention to the low level of platelets. The first diagnosis is “thrombocytopenic purple”, a disease in which multiple hemorrhages occur in the skin. They look like ordinary bruises, so Tatyana, the mother of a restless child, at first did not pay attention to them.
After a short improvement from treatment, platelets began to fall again, and a year later, Cyril revealed a second disease - "acquired idiopathic aplastic anemia of severe form." This is a rare disease (two - six cases per million people a year), in which the bone marrow ceases to produce a sufficient amount of all the main types of blood cells - red blood cells, white blood cells and platelets. So, a person is slowly dying.
Calm, only calm
When you find yourself in the apartment of people who have been struggling for eight years with a serious and rare disease, in which the bone marrow transplant broke, you expect to see the battlefield.
But this is an ordinary apartment, everything goes in it as usual. Mom Tatyana wants to buy her son a tablet to download textbooks for 11th grade there, so that the son studies normally at school this year. The eldest dog Lisa of the Russian Toy breed wants all the attention to be paid to her. The youngest dog Ophelia wants Lisa to disgrace his family and would not try to stand on all guests on her head. And only a large red -haired cat does not want anything, but is condescendingly looking at everyone from the back of the sofa.
A difficult diagnosis quickly becomes the main topic of conversations around a sick person and his family. The diagnosis seems to control life, and the person himself gradually dissolves in it. Usually people have to remind that life is not only a disease, but the Aleinikovs themselves reminded me of this.
Kirill photo: Vadim Brydov for TD“Cyril, you are probably tired of going to the hospital?”
“There are few, now I’m passing tests and once a month and a half I come, I drip, leave,” Cyril says a beautiful, calm, low voice and looks like a young vampire-pale, tall and thin. Due to the low level of hemoglobin, Cyril needs to do blood transfusion every one and a half months.
- And drink medicines?
“Of course, I have to turn my smell, but I drink,” the guy continues as calmly and without enthusiasm.
- It is probably uncomfortable for home schooling?
- On the contrary, it is convenient, it takes less time, you get more attention of teachers.
According to Tatyana, Cyril had to immediately switch to home schooling after making a diagnosis, but he used to mind - did not want to part with friends. Only the last six months he became difficult for him to wear a briefcase stuffed with textbooks, and Cyril himself asked for home schooling.
- When they were waiting for transplants, did you think that everything would end soon?
- Well, it is not a fact that the transplant will help. And if it helps, the disease can return, - the teenager, calm as a rock, is surprised that we are talking only about the disease.
- What do you want to do after school?
- I will hand over physics and I will act. Probably in aviation or heating power industry. It is also interesting what is connected with the engines. Want, I will show brochures? - Cyril is inspired for the first time from the beginning of the conversation, and I understand that I tried to speak with the diagnosis of Cyril, and not with him. - Yes, I will stay in Ufa, I do not want to in other cities. Some friends will leave, but not all. I still thought to be presented with computer science, but now all programmers, then you will not find work. And if I want to make games, you can learn to learn on the Internet myself, ”continues to list Cyril, who has many plans to live.
Mom Cyril Photo: Vadim Brydov for TDFor this unflappable teenager, the diagnosis is part of life and life that had to be adapted. But all the same, only part. For example, he can no longer play football without frequent rest breaks. But he plays.
It turns out that Cyril himself is not even in a hurry to transplant the bone marrow. It will mean that he will have to leave for Moscow for at least six months, from school and friends.
And yes, he is right, she may not help. Another donor may not be found until his age, and then everything will become even more difficult. And even more expensive, says Tatyana.
She, unlike her son, wants the transplant to take place quickly or the doctors have already decided to use a new drug, which is still very much used in Russia and which has not been heard in Ufa at all. And here, too, everything is not easy: by September, you need to decide on the treatment format - but the use of the drug reduces the chances of a successful transplant.
"Get five thousand and sit on the pope exactly"
Mom Cyril by education is an economist. She graduated from college and then decided not to continue her studies. “I was an excellent student everywhere, but I was too lazy to go to the institute, and I did not go. It didn’t hurt me in anything. I worked as an estimate, a specialist in tenders, mainly in the energy sector. And then ... it was necessary to arrange disability. ”
Since disability payments are small, and it is impossible to officially get a job, otherwise they will stop, at first Tatyana issued payments for her friend. But if the parent is not issued, payments become much less - only 2500 rubles a month instead of five thousand.
Kirill photo: Vadim Brydov for TDRecently, Tatyana, spending a lot of time in a hospital with her son, re -registered documents for herself. “I can’t work, the logic is like this: you suit you, you get five thousand, sit at home, live. But in total, we need 20 thousand a month, of which eight thousand for medicines, and here, of course, you will not sit on the pope exactly. ”
Tatyana, like other mothers of seriously ill children, solves a lot of tasks in parallel: from where to get money, ending with perennial “knocking out” free drugs and procedures. She also knits toys and draws.
Her paintings were forced by the whole apartment - she regularly began to draw in the hospital. He and Cyril there are permanent residents for many years and it was necessary to occupy themselves with something. Once, volunteers of the Losses Foundation came to them in a hematological department with a master class on drawing. And now Tatyana is considering that an unexpected hobby also put into earnings. For example, sell knitted toys.
"When it’s very hard - we contact the fund"
All patients of the Hematological Department of the Republican Hospital of Bashkiria get acquainted with the Losses Foundation almost immediately - volunteers and employees of the Fund go to the hospital several times a week. But the main thing is that the fund pays for medicines and expensive analyzes in the Center for Pediatric Hematology, Oncology and Immunology named after Rogachev. The attending doctors from Ufa are in touch with the center and themselves determine what analysis the patient needs and the fund pays for all applications received to them.
Kirill photo: Vadim Brydov for TD“Employees of the fund always in our hospital, constantly help, conduct events, master classes,” says Tatyana. - We did not need help at first, the medicines were given free, but not the original, but Generick - an analogue. And everything was fine, but then he stopped helping us. And to buy the original - eight thousand a month you need. And the doctor advised us to contact the fund. I try not to contact, because the fund in the care of the care of a lot of children. When there is money, we buy ourselves, when it becomes difficult, we turn to the fund. ”
Tatyana, Cyril, Lisa Dog, Ophelia Dog and Red -haired Cat try to cope with the diagnosis as they can. They try to live a normal life. And the “Losses no” fund helps them cope.
Please support the fund by any amount - so that, “if it becomes very difficult”, Tatyana and dozens of other mothers of sick children know where to go.