Translated material
"He will always remain like this in his soul"
Zhenya loves “ninja tortillas” very much and lives like them-he does not sit idle for a second. He dreams of catching criminals and earn a lot of coins. But now his real enemies are a forty -degree fever, a boil and immune neutropenia. They are deadly
We help analyzes for children with primary immunodeficiency collected 5 059 024 R required 5 028 960 r helpQuiet hour
In the Department of Immunology of the Russian Children's Clinical Hospital (RDKB), lunch, but children in masks are rushed along its corridor like little whirlwinds. Back and forth, from one end to the other. Some try to storm a room with toys, but get a rebuff and jump back into a whirlwind.
- Dinner! Topic, lunch! - The teacher in a mask shakes the next boy.
- Sasha, no, a quiet hour! I don't care that you have nothing to do!
- Alexey! I will bite you now!
- Very sorry! - Alexey answers politely and runs away.
The teacher sealed the wings with a red dragon. They constantly break - she explains, laying the sealed beast to dry on the highest shelf. Nobody will reach from the inhabitants of the department there.
Zhenya at a quiet hour in the hospital photo: Julia Skorobogatova for TDThe Sunflower Charity Fund fully oversees the whole department. This is not the only department, guarded by philanthropists, hematology and oncology, for example, the Give Life Foundation is engaged in. And the RDKB is not the only hospital that the “sunflower” helps: also “Rogachevka”.
The Sunflower Immunology Department helps to purchase vital medicines, equipment and other medical equipment, pays for genetic research, organizes the holidays and leisure of the children treated here - creative and developmental classes, psychological consultations, personal and group. Twice a year, with the support of the Posolnukha partners, householders, household chemistry, diapers and baby food are brought to the department. The children's room in which we will meet Zhenya and his mother is also the brainchild of the fund.
This program is designed to provide children with harmonious development. Almost 100% of them are told in the “sunflower”, they are afraid to grow up because they don’t know how to protect themselves, because they have a complex: they are afraid that something is wrong with them. So in the children's room and at festive events, professional teachers and psychologists are engaged in these children.
The teacher says that for her these are ordinary children with ordinary children's needs: to shout, scream, play, do something. And Zhenya Korolev, she notes, is the same: noisy, mischievous, "with an awl in the priest." Hyperactive. Smart boy, especially when you make him sit. But he does not force him to sit.
Zhenya and mother Olga go to the game room for an interview, and the words of the teacher are confirmed. Without hesitation, not greeting for a second, Zhenya shouts: “I want“ Lego ”!” He runs to the box, knocks the lid and begins to scatter cubes throughout the room with a roar. The medical mask barely hides his contented smile.
Nine diseases in six months
In his body there is not enough some important component, and immunity does not work in full range. Usually immunodeficiency is manifested in infants, from several months to three years. However, Zhenya began only a year ago, when he was already five.
“They got, of their own free will to the Sechenov Institute - to confirm asthma. I got sick there, I don’t know what, SARVI ... After that, neutrophils fell < subspecies of leukocytes - approx. TD >. It is not clear why. Nothing has been studied, nothing is known. The body has broken, ”recalls Zhenya's mother. He speaks slowly, carefully choosing words. Then they were closed in the ward for three weeks.
Later, after discharge, a furunculus jumped up at the priest. Together with him, a heat of 40 degrees came, for three hours even a temperature of about 41 was held. The boy was operated on in the hospital in Lyubertsy, but the boil did not heal after it. It became clear that Zhenya had a problem with the immune system, and the family went to the RDKB.
In the absence of neutrophils, any virus enters its body and goes into sepsis. The body itself cannot cope, it produces antibodies against its own immunity. With the help of antibiotics, immunologists managed to knock down a painful heat and eliminate the boil.
Zhenya and mother photo: Julia Skorobogatova for TDLast winter, doctors in the RDKB decided to increase the level of immunity with hormone therapy from Zhenya, and it worked. For a while. The hormones blocked the production of antibodies, ate them. The indicators were leveled, the condition was stabilized, the hormones were canceled after discharge from the hospital. But on this New Year, immunity fell sharply sharply, and Zhenya returned to the RDKB.
There is no forecast. In some children with such a diagnosis, antibodies leave in a year, for some in five, and some are required to learn to live with this all their lives. Without therapy, Zhenya’s life is a complete restriction of contacts, a house, masks, no kindergarten or school. And for nine serious diseases in six months, as many times, Zhenya managed to get sick before the first intake of hormonal therapy (but she was never ill with her at all). "Six months without recovery at all."
Immunodeficiency is severe. It threatens life, disability relies with it. Otherwise, the family does not pull expensive medicines-Mayford, 12-17 thousand per pack, and immunoglobulin-100-200 thousand per pack, immunosuppressor and immunomodulator. With disability, there are difficulties - the family lives in Lytkarin, and is registered in Kostroma.
The bureaucracy is now such, Olga says that it is necessary to draw up a disability exclusively at the place of registration and one day. “When to find time for this, I won’t know the mind. I work, now I took the sick leave [for the care of the child] ” - Olga complains.
The family lives in a rented apartment, there is no housing. Olga works as an operator at the factory and, when Zhenya is sick, takes sick leave. This is very often: last year, in May, she completely spent the 60-day limit of paid sick leave, and for the first time she went to work with sick leave only in mid-February. After the expansion of the limit, sick leave is nothing more than an excuse for non -payment - unpaid. With the receipt of the disability of paid days will be 120. “But [pay] a penny anyway,” Olga notes.
Now it is no longer possible to stay on hormones to the wife: they are addictive, and in combination with its temperament, they give explosive hyperactivity. Today it will be discharged on already updated treatment, with the above drugs. And, Olga hopes, the son will become at least a little calmer.
He will be selected new therapy when it becomes known what kind of primary immunodeficiency form is. This will help to establish tests that will come in two months according to the results of an expensive study ordered by the Sunflower - the state does not pay for such compulsory medical insurance or disability.
Other mothers advised to contact the Olga Foundation. "As soon as I found out about him, I immediately designated there." The fund immediately responded and helped to take the first analysis - on bone marrow infections. It cost more than 12 thousand. For the second money, the Sunflower began to be collected in September, and when Zhenya again lay down in the RDKB in December, a guarantee letter for the desired amount (36,300 rubles) was already waiting for the head physician.
Theoretically, the fund is noted, if you timely identify an accurate diagnosis that replacement therapy successfully provides the body with the function of immunity. A person can live a full life - to study, work, start a family and even healthy children: the carrier of mutations does not necessarily inherit it.
For this, a genetic analysis is needed. Diseases of this type occur both due to random mutations of a “percentage of a population”, as doctors are expressed, and are inherited through the parents who did not learn about this on time. And sometimes, moreover, the result is a combination of genes of healthy parents. In total, medicine now has more than 400 types of primary immunodeficiency.
Diagnosis - cornerstone in the treatment of immunodeficiency. Immunodeficiency does not manifest itself on its own, only through other diseases. According to statistics, in Russia, a delay in making diagnoses of such diseases is five years. That is, for five years, patients have been treated for other diseases. Zhenya was more fortunate. With an accurate diagnosis, he will be able to choose the correct therapy, the correct dosage and concomitant drugs that should maintain his health.
Calm, only calm
The condition does not affect the development of Zhenya - he already knows how to read and write, this year he will go to school, in the garden and in the hospital he found dozens of friends. Actually, friends are almost all the children with whom he faces. In addition to those who do not return the toys: their wife, cries in the lost, writes into enemies. The word "disability" does not fit with him at all.
Zhenya photo: Julia Skorobogatova for TD“This piece! I need him! " - shouts Zhenya, poking in the very core of the box from the Lego. It turns out that he arranged all the chaos for the wrong way: "I want to build a machine!" At home he has two “sunflower” set - another with a machine and a helicopter. Both gathered - under the strict supervision of his mother - and even then did not circle, which, of course, was hard to believe in. Seeing a coin in the depths of the box, Zhenya tossed the contents at a double speed.
- Why do you need it?
- I want to put it in the bank! - says Zhenya and, finally, takes out a coin into the light. - Mine, yes!
Zhenya admits that generally loves coins and in general money. Somehow, studying the letter, he even refused to withdraw ten times the same letter, saying that “you won’t get much money”. His favorite game is “monopoly”. And also detectives on the phone, because he wants to become a police officer.
Separate Love of Zhenya-Ninja Turtles. Mom bought him turtles in all versions, each in place has their own weapons, Zhenya has everything clearly calculated and inventory, it is very important for him. “What is your favorite? Donatello, Michelangelo, Rafael, Leonardo? " - I list, bending my fingers. "This! This! This! This!" - Zhenya pokes in all four. Shreder does not like: a villain.
Zhenya's gaze falls on a red dragon with a sealed paw - so desired, close and distant. From powerlessness, he begins to crack with cubes even louder, although, it would seem, much. More and more of them fly under the table. "Take everything where you need!" - Olga scolds him, trying to catch at least part of his hands. “And then I’ll go the documents now - I’ll hand over where I need it, that's all. You will stay here. "
“Mom will let go with an extract, and Zhenya will go to me to live ...” the teacher nods.
- NO! Oh sword! - Zhenya is buried even deeper into the box behind a new treasure. With an even greater roar. And mom says that he cannot calmly sit even in the church - the first thing is to fly to the toy box and plunges into it. But during the participles sits calmly. And during the baptism, he also did not kick.
Zhenya and mother photo: Julia Skorobogatova for TD“He was generally born calmly. The restless became immediately as he went, ”Mom recalls. They even drove him to a child psychologist - she spent 40 minutes with him, went out and said: “He has everything mentally normal. He’s just such a person, he has such a temperament.” I asked: "Will he ever change?" She replied that in more adulthood, maybe yes, when she understands, when, where and how to behave. But in his soul he will always remain like that. ”
Fortunately, Zhenya did not try to run away from the hospital - he was afraid. So far. But so far it will not be needed. "And I write out, I write out!" - Zhenya shouts triumphantly in the face of the “Lego” peers who came running to the roar. “Both nurses and doctors are also very happy. Though they will breathe calmly, ”says mom.
Of course, Zhenya, despite all hyperactivity, is an ordinary child with ordinary children's needs. But his disease is not usually. It is deadly, especially in childhood. The boy was lucky: he ended up in Sunflower - the only fund in Russia specializing in helping patients with primary immunodeficiency and autoimmune diseases. But, in addition to Zhenya, the fund has hundreds of more wards of children (and since 2017 there are also adults). They can all help them only if there are a lot of coins. Please support the case of Sunflower with any regular donation.