Will it be better than a little Sasha?

The life of five -year -old Sasha fits into the abstract of the medical history. The girl’s mother carefully composed him, because even doctors began to get confused in the medical record of the child

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

In the closet, where Little Sasha climbed a few seconds ago, something thunders. Deriving from the mother of Vladislav, who had already managed to get scared for her daughter and Kot Mickey, Sasha rushes towards me, putting pink running skiing under the mouse. "Look! I'll show you now how I ride! " -Sasha sits on the floor and tries to tie ropes, but this does not work out very well. “They gave me skis for the New Year, I wanted them so much! And I rode only twice, ”Sasha says sadly. “Why is there so little?” I ask. Sasha, not leaving attempts to fasten skis, raises his head and answers: "I could not, because I was sick all the time."

Without the opportunity to break out

Sasha is five years old, she was born and grew up in a small village of Grishenki near Chekhov in the Moscow region. Hence the dad of the girl, Alexei. Vladislav met him when she lived in Moscow. Soon she moved to Alexei, they got married. Vladislav was accustomed to constant crossings from childhood - she grew up in a family of hereditary military, but she always dreamed of being a teacher. After graduating from a pedagogical university, she taught history, law and social studies at school.

Two years after the wedding, Sasha was born. During pregnancy, Vladislav Alexei was fired from a closed enterprise, where he worked for a long time. Future parents understood that they could not afford to be left without work, and therefore Alexei responded to the first offer that came across and got a job at a furniture factory. Officially, the vacancy is called the “workshop employee”, but the duties of the man include both the breakdown of orders and urgent business trips. He can leave the house at five in the morning, and return only at nine in the evening. Sasha and Vladislava almost do not see him.

Sasha photo: Julia Skorobogatova for TD Sasha with a cat Mickey photo: Julia Skorobogatova for TD

After the birth of Sasha, Vladislav could not fully get out of the decree. She immediately realized that in the early years of motherhood, she was unlikely to be able to return to work at a school with a schedule five days a week. Therefore, the woman decided that she would find a part-time job with partial employment, so that, as she says, "at least somehow break out." But later it turned out that she did not even have such an opportunity.

Summary of the disease

At five months, Sasha suffered heavy flu. Then a short lull, after which is a series of fever with high temperature. Since the year, the girl began to get sick constantly, colds went one after one.

When Vladislav begins to talk about her daughter, he takes out a varying abstract, which she carefully compiled on a medical record - even the doctors began to get confused in it. “Here, look, everything is painted here by year,” Vladislav leads his finger on the abstract, pointing to colored circles. “During the first year of life, Sasha had 12 episodes with a fever and a temperature of 40, which we could not knock down for several days.”

Sasha photo: Julia Skorobogatova for TD

Parents led Sasha to all kinds of doctors, but no one could understand what was the cause of constant fever.

Vladislav tried to go to work only last year - in the breaks between Sashin diseases she got an administrator in a beauty salon so as not to “feel like a useless person” and earn money, but very quickly he heard the phrase from the authorities: “Apparently, it’s not the time for you to leave the decree.” No one just believed that the child could get sick so often, the woman says. “People in response to what I need again for sick leave, they made such a person as if I were lying,” Vladislav recalls. In the end, the woman stopped trying to explain something to the authorities and decided to quit. In addition, Sasha almost does not go to kindergarten - during the year she spends no more than three weeks there, the rest of the time is sick at home.

Vladislav with Sasha photo: Julia Skorobogatova for TD Vladislav carefully combs her daughter's hair, as they are very brittle photos: Julia Skorobogatova for TD

Constant fever and colds are not the only problem that Sashin's parents have to fight. Once Vladislav jumped up at night from the fact that the girl screamed heartily. Turning on the light, the woman saw red spots on her daughter’s body, as if someone scalded two-year-old Sasha with boiling water. Later it turned out that it was a reaction in the sun. A few months after that, Vladislav was combing her daughter and noticed that a strand of hair remained in her hand: they did not just fall out, namely, they fell off from the middle of the length. Then the woman took Sasha to trichologists, but they could not explain what was happening to the child. Analyzes for the lack of trace elements were normal.

How is it possible?

In the last year alone, Sasha had 20 more episodes of SARS. “This is not counting complications, otitis media, bronchopneumonia, stomatitis, lymphadenitis ...” - Vladislav pauses, raises his eyes from the abstract and begins to talk about how this is generally possible. After all, the girl practically does not go to kindergarten, does not contact the team. Of course, she really wants, because in the short time she managed to spend there, she had friends. This year, Vladislav decided not to drive her daughter to kindergarten so as not to torment her and herself. Sasha does not go to shopping centers or some other places where there are a lot of people-they simply are not there near the house. She spends almost all the time at home in nature. "Where then do these infections come from, if no research can identify them?" - asks Vladislav.

Sasha photo: Julia Skorobogatova for TD Sasha loves to look out the window photo: Julia Skorobogatova for TD

By coincidence, Sasha and his parents live on the street of the Russian Field Sanatorium. This is the name of the treatment-rehabilitation center located across the road from their house. This is a structural unit of the National Medical Research Center for Children's Hematology, Oncology and Immunology named after Dmitry Rogachev. Here, children undergo rehabilitation after adopted cancer and blood diseases. After another disease, the pediatrician Sasha sent her to this center for a consultation, where doctors recommended her parents to examine the girl at the Rogachev Immunologist in Moscow. The center’s specialist appointed Sasha three analysis to identify or exclude autoimmune diseases, behceca syndrome and immunodeficiency.

All, except for the last paragraph, have already been excluded, it remains to take one analysis. The problem is that it is not included in the list of compulsory medical insurance and costs almost 40 thousand rubles. Sashin parents do not have that kind of money now. Upon learning of this, the immunologist told them about the Sunflower Fund, which pays high -tech tests for children with genetic immunity disorders. Now the Sasha family is waiting for the fund to collect money for this analysis. So far, doctors do not give any forecasts due to the lack of survey results. The official diagnosis of Sasha sounds like "unspecified immunodeficiency." This is a very terrible diagnosis that means that the girl does not have natural protection. It at all cannot resist infections, and that for all other people there is no threat, for it, a source of danger. But if doctors know for sure that Sasha has immunodeficiency, they will be able to choose the right immunomodulating therapy.

"I'm not despairing yet"

During the last examination in the Russian Field sanatorium, social workers who helped Vladislav prepare documents for Sunflower, hinted to her that with such a diagnosis, Sasha could already apply for disability. Vladislav replied: “Give us at least another year, it can be just a combination of circumstances, not genetic breakdown. I’m not despairing yet and I hope that it will be better further. ”

Sasha photo: Julia Skorobogatova for TD

Will Sasha be better? Without the results of analysis of the answer to this question. Doctors cannot identify or exclude a breakdown in the body. But Vladislav and Alexei need to know what is happening with their daughter. Each month, the Sunflower Foundation pays for research for about twenty children, whose parents are tired of uncertainty and need confidence that they will know what to do next. Please subscribe to the monthly donations for the Sunflower Fund, then Sasha and other children will have a chance for proper treatment.