Small jar of blood

Five -month -old Amilia is waiting for her turn for a genetic analysis, which will tell you whether it is possible to help her body restore immunity. Her mother counts the days and is afraid that she can take her daughter and she will not receive medical care

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

Dilyara conducts quarantine in the country near Nizhny Novgorod with her daughter Amilia, mother and brother. The “at least somewhere” was advised by the doctors of the RDKB, when it became clear: the second hospitalization is deposited due to quarantine, and the child without protection from viruses (namely immunodeficiency is characterized) at such a dangerous time should be isolated. Fortunately, many years ago, dad Dilyara built a village house, and for a small family there was a peace and fresh air. Having cut the time for cleaning and cooking during two brief daytime dreams of his daughter, Dilyar tries to understand when everything went wrong.

Amilia with her mother Dilyara photo: Tatyana Tkacheva for TD

Childhood was absolutely cloudless, in their family everyone was protecting each other. Even about the “dashing nineties” Dilyara learned only from the Internet - the happy school years of generation, who was taught by young teachers, familiar with computers firsthand. A real graduation romance, stretching for a train and through the student years and through the first career successes. The girl met with her future husband for more than seven years, but they decided to get married only after a great shock.

Amilia Abdulkhaev. Amilia live with her mother in Moscow. In the summer, they moved to the village near Nizhny Novgorod photo: Tatyana Tkacheva for TD Dilyara holds his daughter Amilia in her arms during a walk photo: Tatyana Tkacheva for TD

“It was three years ago. Dad died. He was only fifty -six years old. It was a blow for me. Maybe due to the fact that he is not, all childhood and school, and indeed all the time together is now perceived especially. A bright flash, constant sunlight, ”she admits,“ and then as if everything went out. ”

I wanted to emergently fill the void, decided to play the wedding. In less than a month, Dilyara found out that she was pregnant. And four months later, the girl slammed the door and left, leaving her husband to guess why this happened.

Amilia on a walk near the house in the village near Nizhny Novgorod photo: Tatyana Tkacheva for TD

“You know, when your hormones go off the hormones, it is sick, the fatigue is constant, I really don’t want to be nervous also because the mother-in-law ordered my husband to arrange a scandal because of a new frying pan and my husband goes and the husband is scandalous,” Dilyar does not have such stories from family life at all. -Before marriage there was rumors that her husband’s relatives are not all smooth, someone even shakes someone. But we just met, it was not here, not nearby, not about two of us. And only when the assault became my reality, I just left. I think this is fortunately. Morally, this gave me a break. Without it, I would not have dealt with the news about my daughter's illness. ”

Behind the veil

In January, Dilyara and his daughter first got to the hospital: Amilia Osipla, the neck blushed, and the high temperature did not fall for several days. Doctors of the Filatov hospital for a month were looking for an intracellular causative agent of infection. As a result, they found a whole “bouquet” - pneumonia mycoplasm, Hominis, cytomegalovirus - and were surprised: where can all this be from the baby? They offered to donate blood to identify the immune status. And with the results were sent to the RDKB.

Amilia Abdulkhaev photo: Tatyana Tkacheva for TD

“The tests came, and we were immediately announced that Amilia had immunodeficiency, that is, the lack of immunity, while they said that we have a wildly strange immune status, so it is better to be observed in a profile clinic,” explains Dilyara. - Therefore, in April we were hospitalized in the RDKB. They studied us for a long time, but the picture is still unclear, so we need a second hospitalization. She was deposited because of quarantine. And more new tests. Among them there is a genetic one who can show what kind of DNA damage to the daughter’s illness. ”

Amilia Abdulkhaeva in the children's arena photo: Tatyana Tkacheva for TD Amilia Abdulkhaeva in the children's arena photo: Tatyana Tkacheva for TD Amilia Abdulkhaeva in the children's arena photo: Tatyana Tkacheva for TD

Honestly, I still have not yet understood all medical details. Doctors talk to me, but I have everything through a veil. I can not fully concentrate, digest. Now we are covered by all the necessary pills, we are sitting quietly in the country, and our main task is to not get sick. But I understand this without doctors: God forbid what. Then I will have nothing to breathe at all, and so everything is difficult: far from Moscow, there is no money, with two children in her arms.

One with two children

The older brother Dilyara is twenty -nine years old, he is a disabled person of the first group, his intellectual development remained at the level of a three -year -old baby. So it turns out that she has two children and each of her own departure.

Doctors could not find the pathogen for a long time, it turned out to be a CMV (cytomegalovirus). After passing the analysis for the immune status, it turned out that Amilia has an immunodeficiency photo: Tatyana Tkacheva for TD

“I remember, I, small, always played school with my brother, it seemed to me that the right game would help and I would teach him to speak,” the girl smiles sadly. - I always adored my brother, as far as I remember, now I also take care of him, before everyone did my mother and dad, I did not experience any pressure in this sense. But most importantly, we always lived in love. I know for sure that parents never even thought of abandoning their son. I saw this and adopted it. So now I will do everything that I can make Amilia live happily and be healthy. As for health, I have no illusions. I could not make my brother speak. Even the most passionate desire and the most “correct” game is not enough for the recovery of a person. Perhaps my daughter will have to exist all her life at the expense of supporting procedures. But the main thing is that a person lives in love. ”

Amilia Abdulkhaev among toys with whom she loves to play photos: Tatyana Tkacheva for TD

Dilyara has to pull their two “babies”, providing their needs on their own. She hopes to return to work in one of the residential real estate projects as soon as possible, since there is no need to count on alimony. The ex -husband believes that it is enough to transfer to his wife and daughter five thousand rubles a month. This in other circumstances would be a modest amount, and a child with a pin requires special care - special expenses.

“While examined, we found out that Amilia is also an allergic, so we even have a mixture for feeding two and a half thousand rubles per bottle, what are we talking about at all? - the girl sighs. - This is not to mention treatment. At first I thought that I would not raise the topic of alimony at all. And even more so to solve the issue through the court. I can handle it myself. But then “fighting” from the husband’s parents began. They suddenly wanted the granddaughter to live with them. I'm just horrified.

Doctors could not find the pathogen for a long time, it turned out to be a CMV (cytomegalovirus). After passing the analysis for the immune status, it turned out that Amilia has an immunodeficiency photo: Tatyana Tkacheva for TD

This is a manipulation, they want at the expense of the child to restore their status of a “normal” family. Allegedly they are caring. Allegedly, the father did not leave. But this is nonsense - a five -month -old child without a mother. Where does this idea come from? In addition, they do not attach importance to the immune status of Amilia at all. A child without natural defense of the body is constantly under threat. And especially with them. I'm horrified. Therefore, I decided to sue. To show that I am ready to fight. ”

Birthday

In August, Dilyara will celebrate the 25th anniversary. She imagined this holiday in a completely different way. But she does not lose heart, because she believes that the world is not without good people. And that thanks to the project of the Sunflower charity fund - collecting genetic tests for patients with primary immunodeficiency - it will receive the most desired gift: their queue with amilia to donate blood for genetic analysis.

Dilyara spends time with her daughter Amilia photo: Tatyana Tkacheva for TD Dilyara and her daughter Amilia photo: Tatyana Tkacheva for TD

“Before the discharge from the RDKB in April, they explained to me for a long time that genetic analysis is our only chance to figure out what is happening with my daughter,” says Dilyara. - We already know that this is in no way connected with the history of brother's illness. But you can try to find out what kind of problem is the problem. And if it turns out, then it will be possible to choose the most suitable treatment. We have very good chances because Amilia is still small. Usually at this age they do not make a diagnosis, sometimes they are generally posthumously. I don’t even want to think about it. But the analysis is high -tech. And I can’t afford. When I heard - thirty thousand rubles, I just almost sobbed. In my situation ... But the doctor said: “There is a fund, they will help you.”

It is strange for someone to hear that thirty thousand rubles are a huge amount. But many mothers in difficult life situations simply have to take such money. Many children with immunodeficiency need examinations that are even more expensive, and the Sunflower charity fund helps them. The wards of the fund are in a virtual queue for help, including in line for high -tech genetic analysis. Dilyara and Amilia dutifully are waiting, hiding in a grandfather's house.

At four months, Amilia fell ill and got to the hospital. Filatov in Moscow. Together with her mother, Dilyara Abdulkhaeva Amilia spent a whole month there. Doctors could not find the pathogen for a long time, it turned out to be a CMV (cytomegalovirus). After passing the analysis for the immune status, it turned out that Amilia has an immunodeficiency photo: Tatyana Tkacheva for TD

“I saw so many kids in the hospital. And everyone needs special help. May God grant them all health, their mothers, and funds that help, livelihoods, ”says Dilyara. “I understand that we are not the same.” And it is very difficult to live in this state of misunderstanding of what is happening and some kind of kind of weightlessness, unknown. But the thought warms me that somewhere in the RDKB there is a tiny jar with my baby's frozen blood. And waits for his turn. And I believe that it will definitely wait. "

You can accelerate the queue of Amilia and make Dilyare a cherished birthday for a birthday, regularly helping the project of the Sunflower Foundation, aimed at raising funds for genetic tests for children with primary immunodeficiency.

We talk about various funds that work and help in Moscow, but Moscow experience can be useful and used in other regions of the country.