BETA

Lack of hope, lack of help, lack of money and a neighbor who demolished half of your house. Who is to hope for a person who fell into a hopeless position

Help live to help now

Svetlana Egorovna is 66 years old, and she dies of a rare and incurable disease. A woman chained to the bed on her own can neither eat nor breathe. In Ulan-Ude-the capital of the depressive and poor region-Buryatia-she feels unnecessary and completely abandoned. All her life she worked and raised children, who now turned out to be the only support and help. A neighbor, clearing a place for his garage, illegally demolished half of the house in which a paralyzed woman lives with her son. Public services, doctors and officials cannot help or do not want to help her, in response to any requests for help by sending paper with refusals.

Read also So that you know “such things” write about what other media rarely pay attention to. For us there are no small topics and unimportant heroes.

The only ones who reacted to Svetlana Egorovna helped humanly-the Moscow Charity Foundation "Live Now", which itself is on the verge of survival. This story is without a happy ending, the story that you and I have no hope for justice, but there is still hope.

They didn't listen to me

“Mom is sacred, she gave me life. I am the former disabled person myself. I had half of my face paralyzed. They robbed me and hit my head in Vladivostok. There were no documents left, and they did not believe in the hospital that I was a Russian, they wanted to hide me from there. And my mother came after me, brought the documents. ”

Maxim is the 41-year-old son of Svetlana Egorovna , a rare example to follow in our time . He earned a construction site, repair and installation of doors. But when his mother was diagnosed with lateral amyotrophic sclerosis - an incurable disease, as a result of which all the muscles slowly die, he devoted his life to the care of her. Now he is always there. He shifts, washes, wrapps, dresses up, wears in his arms, plants, reorganizes, ensures that the vital apparatus of artificial lung ventilation works .

We are talking in a tiny house, from which, like from a pie, we cut half - a person who bought a neighboring site decided to build a garage and demolished half a house. Inside the rest, while Svetlana Egorovna was lying in the hospital, Maxim made a modest repair and a small redevelopment so that his mother was warm and convenient. Not every son today will support the elderly mother physically and morally, and it remains only to guess what efforts this requires a person without money, connections and work.

“Mom has been sick for four years, and we have been diagnosed only last summer,” Maxim touchingly says “we,” as parents when they talk about children. - She immediately turned to neurologists, but she only put her droppers with vitamins and glycine there. Doctors here did not even hear about such a disease. We ask them: "Do you even treat us from?" But no one told us for three years. Once they just called, called to a consultation. Eight doctors gathered, and we were informed, they say, so and so, you have a bass, it is not treated, and it will only be worse.

For a long time we tried to confirm the diagnosis in different clinics, but we were everywhere even refused hospitalization. Only at the end of October 2017, at the University Clinic in Irkutsk, we were told that yes, bass. We returned and began to survive.

Maxim with mother Svetlana Egorovna photo: Mitya Aleshkovsky for TD

Immediately began breathing problems. Mom fell down, she spoke badly. So far, I was in Irkutsk with my mother, I registered in the only fund in Russia that helps people with bass. I learned from them that such patients need artificial ventilation devices. He began to run around all instances. Even the Minister of Health of Buryatia was at the reception.

I came, I explain that my mother has an apparatus of artificial ventilation of the lungs. They say to me with the deputy that we have such a problem in the republic, even children need children. I say, well, I understand that the children need, but what should we do? Our disease progresses very quickly. Yes, yes, we will give you an answer. Well, we are still waiting for him, this answer.

In December, mother was hospitalized at the local hospital No. 4, but the doctors did not listen to, considered it an old crazy woman. But she has a clean consciousness, just speech is broken. She herself read on the Internet that at the same time she was strictly contraindicated in pure oxygen, she tried to explain this to the doctors, but they simply tied her and did not listen to her to the bed. And oxygen, of course, was allowed. ”

During our conversation, 66-year-old Svetlana Egorovna, silently lying on the bed, often smiles, looking at her son, or, conversely, closes his eyes and shrugs when it comes to doctors. Sometimes, taking a sheet with the alphabet, she slowly, the letter by the letter, takes the words.

About n and m e n e s l u l and l and

I am not in r about a g.

N OD DO TO ONALL P O TALAS

“The next day I arrived there, my mother in intensive care, tied to the bed, her appearance is terrible, she is suffocating. I ask the doctor: “What are you doing? She is in the mind, she understands everything, just her speech is distorted, she just can’t have oxygen, she explained to you.” And the doctor replied: "She did not obey us, we tied her." The next day she was discharged from the resuscitation, and I took her home.

The remaining half of the house and the neighboring garage photo: Mitya Aleshkovsky for TD

The New Year was celebrated at home, my mother sat in a wheelchair, but with us at the table, she herself ate, albeit with difficulty. And already on the ninth of January it became bad again. The ambulance was called again. We were sent to the Republican hospital named after Semashko.

There, mom was lying in intensive care for four months. In a month, she became no at all. She would continue to lay there if the fund had not sent us a device for lung ventilation from Moscow.

In January, when I was looking for Ivl, I went to the minister, to social protection, I went everywhere, stoiled to local funds, and they help only children. I did not know what to do. He ran everywhere, his hands dropped. But you can’t leave mom there, in the hospital. The fund has put us in line, I ran again in a circle, back and forth, even though no sense, but I still walked everywhere and found out. Literally every day I went to all instances.

And then one day they call from Moscow and say - the apparatus was released. He himself costs half a million, we cannot afford to buy such a thing. And consumables are also very expensive, while they go from Moscow - they become twice as much as they become. The tube, for example, costs 2900 rubles, and we also need a filter. One part must be changed every day, another time every three weeks, another time a month. Well, in general, let's seek help again. He came to the clinic, which provides palliative assistance in the city, I say: “Here, we have a device that the fund sent us from Moscow, but we need consumables.” So they answered us that, they say, we can’t help now, contact the fund that the device sent you.

What does it happen? My mother worked all her life, retired, and that, no one needs it, or what? In the end, deputy. The chief physician in the clinic, humanly, reacted to us, and a few months later, the consumables began to provide us for free. N AM was advised, while there were no consumables, not to take my mother from the hospital, but we could not take her like it, she was already in the hospital for a long time, and she only got worse. She was not treated in the hospital as a patient, only my sister and I looked after her. Doctors told us: “You will take your mother home? You need to learn. Come and take care of. ” And we actually did everything to care for her.

In general, everything is quite mediocre for us, sometimes, of course, some people, it happens that they will react humanly, but most of us do not consider us people.

When we took my mother from the hospital, I bought a medical bed for 52 thousand in Moscow, with a mattress for five thousand, and the delivery of another nine came out . But no one compensated for anything. Because she - a lying patient - is not supposed to be a bed. Even the document was sent about this. Social protection can compensate for only 10 thousand, if the cost of treatment comes out more than 30 thousand, and there is no treatment from the BAS, then they say that you have nothing to compensate for.

Our budget is simple - my mother has a pension of 14,600, and I receive 1400 from the state to care for it. I do not work, with my mother constantly, last year, there was enough strength and time to plant a garden near the house, and now I could not even move away for a minute. Most of the money goes to products. It’s good that the sisters help, but they also have families, children. In summer, it is even more or less easy, electricity wraps little, and in winter it is already hard to buy firewood and coal. But one trait - there is not enough for anything . ”

Nobody is anyone

Maxim leaves the room for a minute, we stay with Svetlana Egorovna together. The sun shines beautifully on her cheekbones from the window, and the gray hair of short hair could be mistaken for highlighting.

I'm trying to talk with Svetlana Egorovna.

- What did you dream about when you were 20 years old?

In 20 l e, m. L U B and L A P OV S T and T and T and T. WHO O LO OL OVA K R and N A.

Remembering her youth, Svetlana Egorovna smiles happily.

- And now you are reading?

The smile flashed for a moment disappears from her face.

CHILD TO SHEN HEAL.

E -l and b -n ebs a s ... withdraws Svetlana Egorovna on an alphabetical leaflet with a finger. And then he crosses his hands on his chest and depicts the deceased.

Prevo in the ssa ssa rnov and a rnov rnov rno rn and n and a b o l r a x b a s?

B and s

T. I.

DISEASE

Then, having waited slightly, it takes a few more words.

Och e n ’nor n and k o m y e nn na n.

BEN Z N A D GA A.

Maxim is returning.

“Are you so energetic, cheerful, do you still have hope for something?”

- They say that the cure for cancer was invented, maybe they will come up with bass? Somewhere I read that with proper care, my mother will live another 20 years. Although, you know, even if science does something, while it comes to the people ... But still, you need to hope for something, otherwise it will have to be very hard.

While the sister of Maxim through the gastroma feeds Svetlana Egorovna with special nutrition, Maxim leads me to the street to show the cracks that covered the house after the neighbor chopped off half of it.

“Our house is old, 47th year. Mom is large, from the age of 83 she stood in line for improving housing conditions. In the nineties, they combined the queues, and the mother became the 405th. Then we have a new neighbor. He drove and demolished half of our house.

He took and without permission just destroyed everything. Between the apartments now the wall is not capital, and it has become very cold. Of course, we submitted documents to the construction committee, but it was fined two thousand rubles, and that’s all. He is rich, he can do everything. I went to social protection. To the Construction Committee. In housing and communal services. Here, the commission should come. Something should decide. But I don't know how this will help.

Maxim at home photo: Mitya Aleshkovsky for TD

The feeling that they want us to die. Maybe I am also. I am probably a problem for them. I go to the receptions, I ask: give me specific answers about my mother, who has worked all my life, what happens to her and when, who, how and when will help her? They in the face say: "We will answer you." And by mail, we are coming to us only unsubscribes.

I went to the minister two or three times, but now I signed up for the president of Buryatia. I don't know what will happen. I submitted documents last month. They said that somewhere in September they would call. And what is the name of the president, I honestly do not even know. Forgot. When we are chosen by the People’s Khural, they come to the streets and ask - so that you want, vote for me, I will solve your problems, and as soon as they climb there, they immediately forget about everything. ”

- What do you ask when you come to an appointment with the president?

-Well, how, what, here, my mother worked all her life, and she did not have long left, will she ever change something for the better?

What can we

The story of Maxim and his mother Svetlana Egorovna is typical for modern Russia. The hinterland, doctors who have never heard of a rare disease, at best indifferent, and in the worst case, the disregard of officials. Perfect lawlessness. And absolute hopelessness in everything. There are tens of thousands of such families facing rare diseases. And what can be changed here? All doctors? All ministers? All social workers? All the hell are the neighbors?

There is no accurate statistics on the number of patients with BAS in Russia and has never been. It is understandable - a person who is not able to move his hands is unlikely to be able to put a checkmark in the electoral ballot, which means that for the authorities he is not of any interest. According to the BAS Assistance Service, in Russia, from eight to 12 thousand people, right now live with this incurable disease. But only 738 are registered in the fund.

Throughout the country, there are only two medical services of the “Live Now” Foundation, who are dealing with such as Svetlana Egorovna, and who can provide them with qualified assistance and advice-38 employees in Moscow on the basis of the Hospital of St. Alexy and 29 in St. Petersburg based on the non-profit organization of Gaordi . And another 20 employees of the fund, among whom are the very researchers who are hoping for Maxim.

Recently, the Live now Foundation has lost a large financial donor and is now on the verge of closing. It is not completely clear what means to maintain medical services and services that have become not just the last, but the only hope for thousands of incurably ill people throughout the country.

Svetlana Egorovna photo: Mitya Aleshkovsky for TD

Let's look at our capabilities soberly. We cannot force officials to fulfill our duties so that we do not have to collect money. We cannot force the president of Buryatia to make the rich neighbor Maximus the illegally built garage. We cannot force the social protection service to compensate patients with money for medical equipment that they need so much. I would like to have such an opportunity, but we do not have it. Now we have no. Even if we all move to Ulan-Ude and we will picket all administrative buildings every day, this is unlikely to help thousands of patients in other cities and regions. This does not mean that we should not fight for them, but even if the situation in a particular family changes, we will not be able to immediately change the entire system.

But we can make these people have hope, help, care and qualified care. We can make sure that the only organization that helps such patients does not close. Because if the “Live Now” fund does not become, then 8-12 thousand people throughout the country simply suffocate at home, without help, no one needs, full of fear and despair. No matter how terrible it sounds, they will not become anyway, but at least if the fund helps them, their care will not be so painful.

People will always die from the bass. In any case, until the medicine is found. They will always need our help. That is why, if you want to save such patients from a painful death, please make two simple actions right now.

Please issue a monthly donation for any amount. For 30 rubles per month, for example. This is only one ruble per day. There are no little donations when it comes to life and death.

And please tell your friends about this problem. Share this text on social networks, send it through messengers by e -mail, retell it in words to your colleagues and acquaintances, call any person who could help at least 30 rubles per month. If such a micro -sacrifice decorates the number of people equal to the alleged number of patients with bass, then the financial problems of the fund will be resolved. 12 thousand people. 30 rubles a month.

Now it all depends on you personally. Please do not put off the decision in a long box, because many may simply not live.