Nastya and Wolves

As a mother of 12 years old fights an indifferent system for her child's life

Help the communication space help

13-year-old Nastya has been writing a book about wolves for several years. About how every member of the pack is ready to sacrifice themselves for the sake of another, about what monolians they are devoted to their companion until the end of their life. In relations with people, Nastya does not meet this. Dad threw them with his mother when, at a year and a half, she began to choke and cough, and she was made a terrible diagnosis - cystic fibrosis. Since then, she has been watching her mother fighting alone for her life with officials and doctors.

Ahromobacter

Nastya Olkhina and her mother Eugene live in a three -room apartment on the tenth floor of a typical high -rise building of Kazan. Mom received this apartment in a mortgage from the clinic, where she used to work as a district nurse. For the past five years, it does not work anywhere, because Nastya's disease requires constant attention. They live on a pension for disability and a care pension. Barely make ends meet.

Nastya Olkhina and her mother Eugene photo: Alexander Levin for TD

A mini-terrier named a tiger jumps around and, even when they pick it up, trembles with his whole body. The voice of Eugene, skillfully creating the image of a cheerful and cheerful woman, also trembles from tears every now and then.

“The child is long -awaited. I gave birth to it at 27. From three months, a child appeared cough and snot. For an unknown reason. They took tests, pricked antibiotics. In a year and three months went to a planned appointment, and the doctor asked: “Did she go ahead of you? It seems that she has a foreign body in the bronchi. ” They sent to an X -ray, a foreign body was confirmed, put in the department to make bronchoscopy. I still remember how the nurse comes out: "Mommy, rejoice, there is no foreign body." And I immediately have a thought: what then? They gave me an answer soon. Cykovyskidosis is a hereditary disease, the bearers of the damaged gene were my ex -husband. ”

“Nastya, if you don’t want to listen to this, you can go out,” Eugene turns to his daughter. But Nastya - a shy, thin teenager in jeans and a black sweatshirt - is seriously and carefully listening to his deadly disease. She's well done. She knows, like her mother, that all people from the moment of birth are starting to die.

Not hoping for local doctors who could not make a diagnosis for a long time, Eugene took her daughter and left for Moscow. There she was met by the wonderful doctor Olga Igorevna Simonova. Looking at Nastya, whose complexion was cast by blue, and instead of eyes there were failures, the doctor did not answer anything to the mother’s question about how many children live. She could not give any guarantees.

Evgenia later learned that the life expectancy of people with such a diagnosis greatly varies and depends on the living conditions and treatment. In Tatarstan, the maximum age is 32 years. Up to 45 years live in Moscow, and in America-up to 65. (If we believe the Wikipedia, the average indicators are even worse: in European countries-40 years old, in Canada and the USA-48 years old, and in Russia-22-29 years).

“What is this diagnosis? Everything is extremely simple: all liquid is thick with us. In a scientific one, then the cause of the problems is the thickening of the secrets of the glands of external and internal secretion, the difficulty of evacuating the secret and a change in its physical and chemical properties. This is a complex disease, everything flies: pancreas, liver, nose, salivary, lungs. At the age of 13, the child has: chronic purulent obstructive bronchitis, cystic-fibrous segmental dysplasia of the left lung, bronchiectasis of the right and left lungs, mucostasis syndrome or stagnation of sputum, chronic respiratory failure, chronic compensated pulmonary heart, pulmonary hypertension-increased pressure, chronic pancreatitis, chronic chronic cholecystitis And chronic rhinosinusitis ... ” - Lists Eugene.

As a doctor, she studied special literature and realized what everything that is written there could do for her daughter: inhalations, kinesiotherapy (one of the forms of physiotherapy exercises) will break through pills ... But she did not take into account one moment - the flora. It is Flora that affects how cystic fibrosis manifests itself. There are floors more favorable for the forecast, but there are those that even strong antibiotics do not affect. Nastya has just the last, type of flora. As soon as she grabbed some kind of virus, she begins a complication. And she can catch it both at school and simply in a vegetable store, where evil bacteria live in rotten onions and bananas, rotten apples.

Nastya room Olkhina photo: Alexander Levin for TD

Throughout Tatarstan, only three people with such a flora as Nastya are. It is called an ahromobacter. She has a high mortal risk and low sensitivity to the strongest Russian antibiotics (however, like Indian generics).

This flora revealed this flora again in Moscow, in 2014. At first, Nastya was put in the Kazan hospital, but she did not pass brown purulent sputum even after two weeks of treatment. Three weeks after discharge - again the temperature, again exacerbation, again antibiotics. Doctors shook their hands, they say, mom does not work well with the child. However, Evgenia knew exactly what was doing everything she needed:

“We left again to Moscow, to the doctor Sergei Yuryevich Semykin. The disappointing results came - Ahromobacter. ”

Such a flora requires a special approach in treatment. For example, once a year, if an exacerbation does not occur before, Nastya needs to go to the hospital for two to three weeks. And she needs a separate chamber. But for a whole year, Eugene could not prove to local doctors that cystic screenshots should not intersect with each other at all, because cross -infection occurs - they infect each other, especially with such a dangerous flora. But Nastya was offered a common chamber, as for all cystic fibers- two-, three- and five-seater with a common toilet. Only after contacting the Ministry of Health of the Republic of Tatarstan, Eugene knocked out a separate ward for Nastya.

Even with ahromobacter, no antibiotics-generics are suitable, only originals are needed. But original medicines are a lot of money, it is much easier to put a child on Russian analogues. Nastya easily determines the fake: she breathes them and immediately gives out spasms and whistles, and if they are administered intravenously, the child begins to itch and cough.

It is not surprising that treatment in a local hospital did not have the proper effect. The last time, in the fall of last year, Nastya lay in the hospital for almost three weeks. Against the background of treatment with antibiotics, after two weeks, the temperature rose again and the amount of sputum did not decrease. The doctors answered the questions of mom’s questions: “If something does not suit you, go to Moscow.” Until now, Eugene recall her first departure to the capital when she did not let her child die. “Good,” Eugene answered. “According to the law, it is necessary, call a sanitation and take us.” There was no answer.

Nastya Olkhina Photo: Alexander Levin for TD

“No one needs these children. One mother told me, it was, however, for a very long time, as she came with an exacerbation, the girl could not move on her own, so her mother brought her on a gurney. And they say to her in the hospital: "What are you coming here - do we spoil statistics on mortality?" This doctor is still working. ”

Evgenia in hospitals and bureaucratic offices has long been neglected, dismissed from her questions. And she cries and takes out a huge folder with documents and letters and the same thick medical card of Nastya. He asks to turn off the recorder and tells the even more terrible stories of the unfair attitude of doctors to such children.

The “miraculous” way from the map of Nastya disappeared the presence of allergies. Eugene understands that this was done so that it was easier to transfer it from original antibiotics to cheaper generics.

“For them, this is money, for me it is the life of a child,” says Eugene.

Inhalers and vibration duties

It is necessary to give Eugenia and Nastya the due: the girl looks just as healthy. There is no pale skin inherent in this disease with an earthly tint. All this is the result of everyday work. True, periodically Nastya begins to cough, and you recall that she is seriously ill. All day Nastya and Eugenia are procedures. Just to live another day. Every day, Nastya should drink two liters of water. To expand the bronchi, inhalation is needed. After 20 minutes - for half an hour - breathing exercises, and so three times a day. Three times a day - another inhalation by another antibiotic. In total, seven to eight inhalations per day will be set.

When a child in the republic is detected by cystic fibrosis, a non -profit partnership “Help patients with cystic fibrosis” gives parents an inhaler. So it was with Nastya. That first inhaler has long been broken. New Eugenia has to buy herself. The inhaler costs about 20 thousand rubles. The state does not take these expenses.

However, in the fall of last year, partnership published information that acquired 30 new inhalers for sponsors money and distributed them to new patients and all those in need of Tatarstan. Eugene was surprised, since her child did not receive an inhaler for more than 10 years, and she began to find out: none of her familiar parents of children, patients with cystic fibrosis, did not see new inhalers. I requested the lists of those who received it - they refused.

In May of this year, Eugene wrote an appeal to Moscow from 18 people from Tatarstan on this issue. Silence. I made a video and a written appeal to Putin during a hot line. He asked him to help children not to be transferred to antibiotics-generics. It was said that all complaints were sent to local officials, but there was no reaction.

Nastya Olkhina and Mini Toy terrier named Tiger Photo: Alexander Levin for TD

Eugene turned in writing about the inclusion of inhalers in the IPR. IPR is an individual rehabilitation program that is compiled for each beneficiary. Everything is spelled out here: which hospital and doctors are attached to the child, sanatorium treatment, medicines that the child receives. She wants IPR to also introduce inhalers and other necessary technical means. Kygistzitzniki needs a vibration ground that shakes sputum from the lungs and bronchi. Only after it can the effect of inhalations give a deeper effect.

Some parents of Moscow, St. Petersburg, as well as all the cystic screens of Adygea and Saratov, have to ensure that the state issues these technical equipment for free. This is not in Tatarstan. Moreover, when several years ago partnership turned to the Ministry of Health of the Republic of Tatarstan with such a request, it was refused.
Eugene says that she is "fearless to disgrace." And at the same time, more and more often they give up strength. In August, being in a depressed state, at night she leafed through the pages in social networks and accidentally stumbled upon an ad: “If your child’s rights are violated at such points, you can contact us.” She wrote, the lawyers of the human rights project “Patronus” responded, and now, under their leadership, Eugene takes the necessary steps so that at the regional level all the necessary consumables are brought into the list of rehabilitation funds.

“You know, I was fighting alone all the time, and now I feel support. Lawyer Natalia Kudryavtseva does not leave any of my letters unanswered. This is so important, even if these people even in Moscow, far, but I feel that they help me, direct my every step. ”

Eugene suggested to other parents in Tatarstan, in whom children are also sick with cystic fibrosis, together to achieve the necessary technical equipment in the regional list of benefits. She invited them to act in parallel. But the parents replied: "We have no strength." Others simply said nothing-they have enough funds, and they can afford to take children abroad and independently buy ariginals and inhalers. They are not going to fight the system.

"Goodbye, girls!"

“Dad“ threw us ”right away. He is a driver-instructor. While the child was examined, he drove by car. But as soon as the diagnosis was exposed: "Goodbye, girls." At first I was angry with him, to tear her hair. And then I realized: in order to raise a child, knowing that you will bury him before yourself, you need to be a strong person. And he is a weakness, he is just a rag. You invest, invest, and the return is only her love. There will be nothing more, ”says Eugene with tears, when Nastya had already gone into her room.

Alimony managed to knock out through the court. Dad does not want to communicate with his daughter. Monthly income at Nastya and her non -working mother - 19 thousand rubles.

Nastya Olkhina Photo: Alexander Levin for TD

“In order to smile, I will turn the mountains,” says Eugene.

Now Nastya rarely shows her mother her tears. Like mom - Nastya. Nastya recently had hemoptysis. Eugene saw him by accident. The daughter did not say anything, did not want to upset ...
Nastya writes stories about wolves. Usually inspiration visits her at night. Then she gains delicious ones, puts on headphones with her favorite music, hangs a blanket over the bed, forming a cozy hut, and writes ... And in the morning, real life begins with the discharge of sputum, wheezing and whistles in her chest. And again, mom with anxiety in her voice will ask ten times a day: “Drink? Has you? " And somewhere you need to take strength.

The history of Evgenia and Anastasia Olkhin is not unique. Only in Tatarstan more than a hundred children with cystic fibrosis. Many parents are forced to fight for the right to save their children, now and then come across the indifference of doctors and officials. Most of them do not have the means to provide children with the proper quality of treatment. Therefore, the work for which Evgenia Olkhina took so important, along with the lawyers of Patronus, is to achieve the inclusion of the necessary technical equipment for patients with cystic fibrosis. It is necessary to draw attention to this problem, and lawyers do everything possible for this.

So that such parents as Evgenia Olkhin do not drop their hands from the struggle alone, they need qualified help. And the “patronus” asks you for material support in order to continue to protect the rights of people who have fallen into difficult life situations and feel powerless in front of the system. Please help!