Transformer Egor

Yegor was lucky twice. A rare genetic disease was diagnosed to him early and the Sunflower Foundation helped him in time. Now there is a chance that he will recover

We help analyzes for children with primary immunodeficiency collected 5 059 024 R required 5 028 960 r help

"Transformation! Transformation!" - Egor announces with an important voice, puts the cubes to the side and presses the button on his wrist. Now he will turn into a robot. A three -year -old chubby peanut only plays: robots and transformers are his new passion. Or maybe he doesn't play? Maybe he knows that after the bone marrow transplant, the truth took place with him?

"You may not speak your husband"

Barbara and Sergey met in the village of Belorogolovsky Kurgan region visiting friends. Barbara worked as a seller, and Sergey traveled to the north. They met, got married, then the baby was born - healthy and large, more than four kilograms. And suddenly, when Yegor was a month, it rushed.

Purulent otitis media, inflammation of the lymph nodes, a hospital, overwhelming leukocytes. Then antibiotics, improvement, extract, deterioration, staphylococcus, infectious disease for a month. Darming in the lungs, pneumonia, not pneumonia, fungus. Then again lymph nodes, surgery, antibiotics. This lasted three months. The doctors did not understand anything, one guess was worse than the other, Barbara moved with Yegor from one hospital to another, tormented from ignorance and assuming the worst.

Egor with mom Varvara in the department of clinical immunology of the RDKB photo: Alexander Zemlyanichenko Jr.

In Moscow, they immediately said that it was. Primary immunodeficiency. A rare genetic disease, when a person does not have his immunity, and he is vulnerable to any infection. When a genetic analysis was done, the diagnosis was confirmed: chronic granulomatous disease. “It sounded scary, but at the same time it was a relief - at least it became clear what it was and how to treat it,” says Varvara.

Antibiotics, antifungal and anti -TB drugs were prescribed. “The doctor explained to me that this is a genetic breakdown along my line,” says Barbara. - I am the bearer of this broken gene, and it is transmitted along the female line - the girls are carriers, and the boys get sick. The doctor also said that I could not tell my husband. That husbands often leave in such cases, get married again and give birth to healthy children. ”

Then Barbara became scary again. She thought, thought, prepared, doubted, but still said to Sergey. “Are you crazy? I will not go anywhere from you with Yegorka. " It became relieved of the heart, but here the new problem is that the local hospital refused to give prescribed drugs. Like, there are no them in stock, write letters.

Egor in the hospital photo: Alexander Zemlyanichenko Jr.

Fortunately, in the Russian children's clinical hospital in Moscow they advised to call the Sunflower Fund. They immediately responded, helped to draw up complaints in the regional Ministry of Health, the prosecutor and the governor, but for now they were under consideration, bought all the necessary medicines. For example, one of them, itraconazole, costs 23 thousand for 14 tablets, and the monthly course goes almost 50 thousand rubles. Parents did not have that kind of money, but it was necessary to accept it at once. Three months later, complaints reached the addressees, and the state allocated medicines.

“About then we were told that we need to do bone marrow transplantation, since the bone marrow of Yegor can never produce antibodies to viruses, and all these drugs are half measures to extinguish the symptoms. And so Yegor will have a chance for a full life. I was very scared, worse than at the beginning. Then I did not understand what it was. Also, the relatives were all against it, they say, why do such a terrible operation, he walks, runs, looks healthy. ” But Barbara knew the best of all how her baby was sick, and she and Sergei agreed.

Play "win"

The donor was looking for a long time. A year later, they found a coincidence by 90%, but the doctors in the RDKB said that they would not take it, look for 100%. A year later, they found. In Germany. “All we know is a girl, born in 1994, 74 kilograms,” Varvara smiles. - You can meet only after three years. I would really like. Look at a completely stranger who suits my son 100%, despite the fact that I, my mother, are only 80. Well, thank you, of course. ” Barbara looks like a tear.

Before the transplant, there were six days of chemistry to neutralize Yegor's bone marrow. Barbara was happy and afraid. Until the last, while looking for a donor, I thought that at any moment I could grab a son and run away. And when they started chemistry, I realized that there was no way back. The transplant was assigned at 1:30 in the night. The doctors put Yegor a dropper, connected everything, showed where the alarming button was, and left. Barbara was left with him alone in boxing and frantically followed all the indicators, ready a little to press on the button. The longest night in her life ended at nine in the morning with the end of the transplant.

Egor in the game room photo: Alexander Zemlyanichenko Jr.

Yegor transferred it good. I didn’t eat anything and drank anything for the first week, my hair fell out after chemistry, a skin rash got out, but then I went recovering. For another four months he lay in the hospital under surveillance.

- Stop playing to speak. We will play catch up! - Egor orders the machines, to us and himself.

- Maybe play to sleep? - Mom asks.

- No, play the catch up!

This is his new favorite word form - every day takes the next verb and sets him in the name of his games.

After Yegorkina, a year passed. He still drinks immunosuppression, doctors are rebuilt, but Barbara hopes that they will be canceled soon. And they will allow you to remove the mask. And it will be possible in the kindergarten. “I dream of sending him to the garden,” says Barbara. - He really lacks communication. When Seryozha is on the shift, we are at home almost all the time together. He even in Moscow always strives for Moscow, as for a holiday. As soon as I get a suitcase, how he jumps joyfully: "Hurray, we fly to friends!" - “Egor, we fly to Moscow, to the hospital” - “You are in the hospital, and I am to friends!” To Vanka, to Goshka, to Polinka. " “Well, to friends to friends,” I tell him.

They fly to Moscow several times a year of Egorkin’s life, and he will be four in July. Tickets are also paid by the Sunflower Foundation, because the state allocates money only for the train. Yegor with his diagnosis is impossible to go on a train by train.

“I want soup! Soup! - Taratrot Yegor. - Transformation. " Apparently, you need to turn again from a transformer into a little boy to eat soup. “The stubborn has become, there are no words. Surprisingly, by the way, how, after the transplant, his tastes have changed! - Varvara is surprised. - Previously, he loved dumplings, meat, pasta, not to tear it up. And now in no - but he loved soups. And sweet. Maybe our German Fairy is a vegetarian-sweetheart? But with sweet it would be necessary to finish. On this visit, doctors have already hinted that it was time to sit on a diet. 31 kilograms, yes, Yegor? "

“Play to win! Play to win! " -He already forgot about the soup and again became a transformer-machine. "Egor won!"

Egor photo: Alexander Zemlyanichenko Jr.

Yes, Egor won. Although this is not the end, but already similar to the finish line. About 200 children with primary immunodeficiency are born annually in Russia. Due to the late diagnosis, 80% of children die. Genetic tests are the only chance to confirm the diagnosis in time, prescribe medicine and begin therapy. Often a child needs a screening of viral infections or a genetic study, which allows you to detect a mutation of a particular gene at an early stage. It is very important to do it as soon as possible.

High -tech tests are expensive and are still not included in the compulsory medical insurance system, although the health and life of hundreds of babies directly depend on them. These tests and expensive drugs, and even the plane tickets are paid by the Sunflower charity fund. But the fund exists on our money with you. Please arrange a regular donation, and without exception, small fighters and sweet tooth will be able to win. And live.

- Play to sleep! - Egor commands.

“Well, finally,” Mom smiles.