Svetins children

One day of a nurse from a children's hospice "House with a lighthouse"

Help a house with a lighthouse help

Every morning light sits in an electric train and goes to his children. Light 27, and she has 28 children. They are wards of the children's hospice “House with a lighthouse”, where Sveta works as a nurse. The routes are very different - either the north of Moscow, or the Yaroslavl direction of the Moscow region. Sveta lives in Sofrin - this is its "zone of coverage." Today - a girl and a boy in Mytishchi and another boy - in Sergiev Posad.

We meet with Sveta at a private house in Mytishchi. Here lives Polina, a 16-year-old girl with cerebral palsy, epilepsy and a whole set of other diseases. Some are still not able to diagnose.

Svetlana photo: Anna Ivantsova for TD

Mom Polina Oksana, like her husband, works in the police. After the birth of her daughter, she tried to find support from the state, but very quickly became convinced that the state was not needed by such a child, there was no help and no. For 16 years, Oksana looked after Polina herself.

Under the guardianship of the “House with a lighthouse” Polina just recently - since July. Then Polina's mother buried her beloved niece Nastya, who was a ward of Sveta. “Oksana believed that everything was fine with her, and there should be more difficult children in the hospice,” says Sveta. Nastya died of cancer in June, after that Oksana agreed to give her daughter under the guardianship of the hospice.

"Why do you need shoes if the girl does not walk?"

Oksana feeds Pauline from a spoon, tells and at the same time talks with his daughter: “Before the deadline, she went forward, did not turn over, yes, daughter? Up to a year, we were given good forecasts that everything would be fine, that premature children make up for the missed, and at 11 months they made an MRI and all forecasts crossed out. Then they began to twist a finger at the temple and said: “Why do you need all this, give it where should, give birth to another.” Yes, daughter? They still tell me this. When we go to the hospital, they say to me: “You artificially extend her torment. Why do you need all this? " I say: "Well, let's cover the pillow, the torment will pass." But most of all I was killed by a phrase in intensive care, when we acted once again. A young doctor who can also have children or have children, said to the whole department: “Why did you drag her here? I said it is useless. " In general, not so bad, yes, bunny? We are here. That's just with breathing some problems, I don’t know. (Polina wheezes). We are harmful. "

Polina photo: Anna Ivantsova for TD

Polina recently had breathing problems. She freezes and does not breathe. Mom asks to start breathing, then Polina begins to breathe, but not immediately and with a loud wheezing. Before that, there were other problems: two years ago, Polina was taken to intensive care with incredibly low hemoglobin level. Doctors said that they do not live with this. The reason cannot be established so far. Now Sveta comes and puts Polina's dropper with iron, it helps.

At birth, Polina transferred clinical death and hemorrhage to the brain, since then she has not seen

And more recently, employees of the children's hospice were able to first collect the signatures of doctors for medical and social examination. Before that, ten years ago - Oksana was once offered to allocate a stroller for their daughter. Such a domestic is an unbearable bunch of iron. And now, finally, the doctors have made up a complete list of what Pauline needed. And with this list the commission came to Polina. I did not come right away, but this is a separate story.

“And now, when they read the whole list, they say to me:“ Well, why do you need this? Why do you need shoes if the girl does not walk? " And when they arrived in the last Wednesday, I tried to explain to them that the child was needed, that the child is really growing, and her legs and pens are deformed, and so that there are no such pains, you just need to fix it. They just didn’t hear me. This was done like this: a woman from the commission sat down, clapped her hands and said: “Fields, show your tongue!” It’s a pity, the fields were somehow wary at that moment and did not send anywhere. Our fields can swear. ”

Polina 16 years old. It weighs 20 kilograms.

Svetlana examines Polina

At birth, Polina transferred clinical death and hemorrhage to the brain, since then she has not seen. The girl’s eyes seem alive, she looks at the speaker, but, apparently, this is only a reaction to a sound source. Doctors say with confidence that Polina sees nothing.

“She also loves to watch football with dad. As soon as dad turns on football, the fields immediately begin to shout: “Hurray! Goal!" - She knows how to say a “goal”. You can hear the whole house, how the fields screams when dad is watching football. ”

***

While we are going to Cyril, the next ward of Sveta, Sveta recalls Nastya - Polina’s cousin: “It seems to me that we managed a lot during this time: she got married, and we went to the water park, brought the stroller, walked, went to the restaurant, and they went to the cinema. We took a first -aid kit with us. We had oxygen cylinders, painkillers, we also had to anesthetize at the wedding. But these two months were very saturated, she lived, and did not lie. I remember her like that - beautiful, energetic, now I will show photos.

In principle, we are not an ambulance, we should not come at night, but there is an opportunity - you are still going. ”

Svetlana photo: Anna Ivantsova for TD

"We need a verticalizer, and they stopped issuing them"

While we are going, Sveta says that “all stories are very different,” and tells about Cyril. He was born healthy, and everything was fine up to about six months. And then he began to lose weight. After long adventures, a diagnosis was made - colloidal astrocytoma. This is such a “intermediate option” between a benign and malignant brain tumor. After several operations, Kiryusha fell ill and blind. Now Kiryusha is six years old, he lies and does not see anything.

Kirill photo: Anna Ivantsova for TD

Sveta, mother Kiryusha, says: “There were five operations, chemotherapy, radiation therapy, and we came to such a state. I don’t know if he understands me, but we have a kind of communication. I will say: “Smile,” he can smile, maybe he somehow reacts to the intonation. If my dad and I talk about the past, about the time before the illness, as we went somewhere, as he asked for something, he begins to react, smiles. Well, unfortunately, so. "

The most unpleasant consequence of the disease, the mother calls epilepsy - constant attacks began a year and a half ago

Cyril lies, his eyes are open, but he sleeps. And his mother of Sveta talks about the Medesser Sveta and her work: “And Sveta at 10 pm came to us and sat with us, a rare person, and she has no schedule. You can call at any time of the day or night. Unfortunately, it turns out that you are simply dipped in it with your head. Life is divided into “before” and “after”. Well, I saw on TV how they walk with some droppers. But it seemed that it was so far that I could not imagine that there could be something like that, and it is very difficult when the doctors did their job and simply send it to lie. And you just don't understand what to do with it. Now he is lying, so what? What to do with it? How to restore it, which doctors to contact? "

Svetlana examines Cyril

The most unpleasant consequence of the disease, the mother calls epilepsy - constant attacks began a year and a half ago. “We were told that epilepsy is transformed into Lennox-Gasto syndrome. This means that it is no longer treated. ”

I still ask if Kiryusha is supposed to support any support from the state. Mom replies: “They didn’t give out anything, because we already have panties, and they have“ diapers ”they have clogged there. And we cannot present checks to be given money, because we do not buy diapers. We need a verticalizer, and they stopped issuing them. This is very bad, because we have breathing problems, it is necessary that Kiryusha is vertical. So the state is not needed, unfortunately. ”

***

While we are going to the third child - Maxim, Sveta tells about his work: “You get tired, of course, despite the fact that you can drive much more. I had one family, I ask: "How to get to you?" -The grandmother of the child says: “You reach such a stop, and four kilometers from there. Then you need a house under a raspberry roof. ” - I say: "What is the house of the house?" - "We have no numbers." A small village towards Sergiev Posad. Nastya lives with her grandmother. I was so surprised - four kilometers on foot to go unknown where, and another house without a room. So we have written down - a house under a raspberry roof. ”

He slept in them in the corridor, and there were bare walls and such a sagging metal bed, and below the boards

Also, on the way to Maxim, Light recalls the departed children. “I had a boy Pasha in Sofrin, he lived in the house opposite. I went to him on weekends, preparing him all sorts of delicious things. Because grandparents believed that he should only be fed with soup, because it was useful, and he dreamed of donuts, he wanted delicious ones, and we all loved him very much. He was ten years old. He was so amazing, because the family was not easy, his parents were deprived of parental rights, and his grandparents raised him. He slept in them in the corridor, and there were bare walls and such a sagging metal bed, and below the boards. It was terrible. But he was so kind. We brought the stroller and went for a walk with him. He could walk then. He was met by classmates, and he rejoiced at this, although no one came to his house - neither the teacher nor classmates. "

Svetlana photo: Anna Ivantsova for TD

Sveta has been working in a children's hospice for a year and a half. Prior to that, she managed to work in an orphanage, the children's oncological center named after Rogachev, the Black Palliative charitable foundation, studied in absentia in absentia on a defectologist in absentia. To my question why she decided to work with incurably sick children of the world simply answers: “Work in the“ House with a lighthouse ”brings the result, we achieve it. If the child needs to buy a crib, we buy a crib. If the child needs to knock out an anesthetic, we knock him out. ”

On the way, the world talks with a colleague on the phone. From the conversation it is clear that to knock morphine for Maxim, to which we are just going, is not yet possible. With Morphine and Moscow, problems, and in the region is very difficult.

"Why does Maxim not go to school"

Maxim is eight years old, he has the same diagnosis that Kiryushi has a colloidal astrocytom. But Maxim’s condition is very difficult. Now he receives a maximum dose of tramal, but on any day an anesthetic may not affect - and then morphine will be required.

“I still found Max when he walked, participated in our events, sailed with us on the ship. Now no longer walks. Two or three weeks ago, clowns from Canada and Austria came to him. And this has become a motivation for Max. He began to at least raise his hands and bend, and before that he drove his mother - give it, bring it, ”says Sveta.

Maxim photo: Anna Ivantsova for TD

In three and a half years, Maxim was ill with chickenpox. After that, he began headaches, began to interfere with the light, and he slept all the time. They called an ambulance. The doctors decided that the boy tolerates the consequences of chickenpox so hard. Four months later, the hydrocephalus was diagnosed. Even later, the MRI showed that Maxim’s brain is completely affected.

“We have a very rare case. That is, this is usually a benign tumor in the head in the form of a pebble, it is removed, and then achieves chemistry. And here, although it is benign, is completely struck by the brain and spinal cord. He got it like that. A very strange look, only a few cases in the world, ”Maxim Masha sighs.

Maxim has blood from the nose, he will lie so that the blood calms down, and the teacher shouts: "I have to wait all day?"

Last year, Maxim, when he felt better, went to school. Now he cannot walk, and the teacher is not eager to come to the house. “This is a sore question for us,” says Masha. - She promised to come, check the child, his condition, but did not come. Not catching up. Yes, Max? They do not understand the characteristics of the child. Demand in full, yes, max? They do not understand that the child may have problems, they do not understand that he is quickly tired. The past teacher cursed at him and screamed. The maxim of blood comes from the nose, he will fall comfortably so that the blood calms down, and the teacher begins to shout: "I have to wait all day?" And in a child, blood flows from the nose. ”

Masha is hard without male help. The children's hospice pays for a nanny who sits with Maxim when Masha is at work. She is engaged in the younger sister and brother of Maxim, but there is not enough male assistance.

Svetlana during a visit to Maxim and his family

Some time ago, Maxima fell sharply platelets, now he constantly needs to do blood transfusion. But the ambulance doctors refuse to transfer the lying child. “They arrived, did not want to take it, brought me to hysteria, I roared. They say that they say, go, look for neighbors who will help to transfer the child. I say: "Now is a working day, all men are at work." “No, then you are a bad neighbor, if there is no one nearby.” As a result, we dragged Maxim with the driver and paramedic. Without a stretcher, on a tarp. ”

When we are about to leave, Masha complains to the light, which is the hardest thing to wash Maxim. At eight years, he weighs 60 kilograms, and it is very difficult to lift it to Masha. Already standing in the doorway, Sveta says: “Do you know what? Let me come on weekends, and we will wash it together. ”

Svetin working day ends.

Svetlana photo: Anna Ivantsova for TD

Sveta works in the children's house "House with a lighthouse." For her hard work, she receives a salary. By our standards, this is a worthy salary . And this is how such work should be paid. But again you have to repeat: the state does not give a penny a “house with a lighthouse” for work - it works for your donations. And for each ruble spent, it reports .

You can also help - including paying the light and other nurses and employees of the hospice. It is very easy to do this - just arrange a monthly donation for any amount, and in the new year the “House with the Lighthouse” and his nurse of the light will continue to help inconspicuously sick children. Please do it right now. Thank you!