About people who fulfill the dreams of incurably sick children

About people who fulfill the dreams of incurably sick children

“On Thursday, Dima will have a birthday, it will turn five years old. Before that, he had never been satisfied with the holiday on his birthday: it seemed that Dima was still small, had not yet grown. But now the holiday will certainly be. Dima dreams that hedgehogs have performed at his birthday. ” This is a text from the November post in Live Lidia Moniava. This is an ordinary text, such texts with requests to help arrange a little children's happiness Lida a month writes several. Lida works with children and young adults in the charity fund of the Hospice of Vera.

I will meet with her and find out that the dream has come true. There were a show of trained hedgehogs, the artists decided to perform for Dima for free. There were a lot of balloons in the housing lobby, children's champagne, cake. But even though Dima tried, he could not celebrate for a long time: he was very bad and painful. Nevertheless, the hedgehog sat on his knees. And Dima gave a aquarium with a beautiful fish. Dimina Mom hopes that doctors will pick up an optimal scheme of pain relief and the son will become easier. It is impossible to cure Dima ...

Bicycle, lego and iPad

The latest gifts are incurable to sick children are part of the Lidina work in the fund, her responsibility for the dreams to come true, "despite ...". Lida says: “Sometimes the parents of a sick child are not up to his desires, the disease takes all their strength, and it is important to understand in time that it is time to fulfill the dream, that it is important to be in time while the child can still rejoice.” What dreams, employees of the fund and doctors will learn from gradually, in long conversations, tea drinks, as if by the way.

Want to know what dreams are these?

“Help, please, give the steam locomotives Chaggiton to one little girl. She was three years old, leukemia, her legs refused during treatment. Now relapse. She loves the steam locomotives of Chaggiton and will be very glad if she has many different steam locomotives. ”

“Suddenly someone has an unnecessary semi-professional camera? For a six -year -old girl with kidney cancer. When asked how to please, the girl says: I want to recover and return home. And also a large camera on the strap. With the first dream, it seems, nothing will come of it. Doctors say that things are bad. And the camera can be taken and presented, the girl will be so happy and will be removed. She is mom, mother - her. He will remain as a souvenir. ”

“Today, a nine -year -old boy was discharged from the hospital, his illness (blood cancer) could not be cured. While the boy feels good, he can play and rejoice. He said that oh-oho wants Lego Star Wars. Suddenly someone could buy such a Lego? And we will send it to the child to play. ”

“We are looking for a makeup artist and a photographer who could arrange a photo shoot for a 20-year-old girl in the coming days. Cancer, cannot get out of bed, but I would be glad if interesting images were invented. ”

“The six -year -old Alsu has an incurable form of cancer with metastases, wherever possible. More recently, Alsu asked for a bicycle as a gift, but now she has no strength to ride a bicycle. Alsu wants an iPad to lie and play everything that you cannot do in reality. ”

Lida writes about these dreams in his LiveJournal is so simple and ordinary that at first it does not really reach that it is worth a request to give the boaters of Chaggiton. This is right, because the shocking of air on the topic “Why these torments are children and whether there is a logical understanding of the very possibility of childhood death” are meaningless. And to make sure that the ending of children's life with joy and this joy was seen and divided with the child, exhausted and desperate parents, really.

Usually, in such a post, Lida gives a link to a store where you can buy a dream. Prior to this, she has been choosing the optimal and economical option for a long time, because not a single dream is inherent in any special budgets, but is designed to respond to the one who reads.

About people and freaks

I will ask Lida: “But it happens that the desire cannot be fulfilled? Are there unfulfilled? " I ask, because I understand: the employees of the fund are not wizards, and they do not have any special resource; They, by and large, except for the Internet and selfless ministry, have nothing. Lida, thinking briefly, replies: “This does not happen. When LJ does not respond, I begin to call our permanent philanthropists, and certainly someone helps. But sometimes we do not fulfill a desire, because we do not have time. After all, even, even doctors, can certainly know how much time the child has. ”

This is her said “do not have time” works as a sudden blow under the breath, because Lida talks about the last gifts that the word “death” leaves the context of the topic. And, apparently, this is the most important achievement - to make the child take his childhood happiness, not clouding the intimacy of the end.

An amazing thing is the Internet. Very often, Lida in his posts with a request to help children (not only with gifts) literally a few minutes later makes a note: “Thank you, helped” or “Not even a minute passed, and they bought an e-book” (for a 14-year-old boy with a brain tumor).

I ask her about those people who respond. Who are they, why do they help and what drives them? It seems to me that these should be some special people, because they voluntarily participate in the last days of the child, even ensuring his joy, it hurts. This is special courage and wisdom so as not to close your eyes and quickly forget what you read, but go choose a camera or flying helicopter.

But Lida knows little about them: “No one is striving to advertise their help.

People just help - some once, some constantly. We have a wonderful Paul. He once fulfilled a children's request, and then began to constantly respond. He has a huge “Hammer”, and Pasha regularly takes sick children for examinations, or escorts to the airport, or takes a special bed for the child in the suburbs. And the girl Ulya, who responded to the request to hold a photo shoot, is now working in the fund. She then took wonderful photos, and that girl asked her mother to print them on T -shirts so that friends came to a funeral in them. ”

Lida admits that there is not enough time to get to know the donors closer. In the story with the latest gifts, those who need them occupy her all the time. She also says that parents sometimes do not have the strength to say “thank you”, because there is no strength to react to something except the illness. And Lida regularly does it herself. “Remember, I asked you to give a gaming laptop to a guy who lived in a hostel and a friend pricked him“ tramas ”? And then we asked to fulfill his dream and give tickets for a concert in the club. I am very grateful to you that you helped to do all this. Today, the young man was brought to the hospice with severe pain. Thank you for thanks to you so much good left behind you.

And thank you for another boy. You gave him a laptop and discs of Tsoi as a reward for agreeing to undergo chemotherapy against blood cancer. Chemotherapy did not work. On Friday evening, the boy was discharged home from the hospital, and it ended very quickly. But the laptop was. And was Tsoi. Thank you.

You change a lot with your affairs, which, from great modesty, seem small. When there are few days, everything is especially valuable. Each thing, every executed request. Everything acquires a huge meaning and becomes the light thanks to which the darkness retreats. ”

But there are also desires that Lida does not report in LJ. These are very simple desires and very strong. Almost all the children who went through resuscitation, difficult treatment with chemo-therapy and strict diets, to the question: "What do you want?" - They answer: “Food from McDonald's. And then Lida goes to McDonald's and brings the coveted burger or pizza to the hospice. And there was a case with a boy who was lying almost unconscious in intensive care for a month, but when he was brought by Free potatoes from McDonald's and said about it, his fingers trembled and reached for a bag. Now the employees of the Fund every evening bring a guy to the Hospice Chamber, to the very one who helped to get to a concert with a friend, sushi from the restaurant. Food from a happy life without restrictions is also a way to have time to feel its fullness.

It is inconceivable, but the fact: regularly in Lida of Moniava, comments of persons appear (I do not write consciously), which are against the last gifts. I will have to quote: “Sometimes I read that before death a dying person wants an iPad with toys. It's scary. Without icons, without a priest. The immortal soul is facing eternity, and the devilish things are slipped to him. ” Previously, Lida was indignant and worried, now she does not delve into. He simply removes from the magazine so that the parents of the children do not stumble upon the abomination.

It happens that the last gift is more than the last dream. Wider than the individual joy of a personal nature. So it was with marzhana and Lesha. Many read their stories, but it makes sense to remind.

The 14-year-old Marzhan Sadykova fell under the care of the Fund last fall, when it turned out that the sarcoma was not treated. The girl asked for a camera. And then at home, in a one -room apartment, practically without getting out of bed, because there was no longer the strength to get up, marzhana with an obsession with a person who understands everything about the return countdown began to remove portraits of familiar people. She came up with images, and the fund’s employees were looking for props and scenery, and provided equipment. In fact, with their help, the margin’s room turned into a professional studio. Two months later, an exhibition of her work “Guests” was organized at the Pioneer cinema, which was visited by more than 4,000 in two weeks. The marzhana exhibition became her manifesto, a message to those who remain. In her video message, made literally a day before his death, Marzhan said amazing words: “A limited opportunity is an opportunity ..., you just need to start going.” And one more thing: “Use your dreams to the maximum, act, relying on love, be ethical and be happy - this is the best that we can do.” This video message collected about 400 thousand views.

And then, immediately after the exhibition, Marzhan signed all her photos and distributed to her models. But this was not her last gift. In March, on the eve of her birthday, the volunteers asked her what she wanted. Marzhan was already very weak and said that she would be glad if on this day people who learned about her will celebrate this event. Lida wrote about this in her magazine. “I did not expect at all that this request would cause such a response. People from different countries began to send videos with a record of how they celebrate Marzhan's birthday. Someone did it in a family circle, someone in a restaurant with a company of friends. Marzhan managed to see all the congratulations, but after three weeks she was gone. ”

And there was a gift to Leshe Anichkina, a 29-year-old teacher of history in a boarding school. (Sometimes gifts are also very necessary for adults.) On October 21, Lida wrote in LiveJournal that Alexey lies in the hospice and that he was a fan of the famous rock group Scorpions, which these days gives concerts in Moscow, and that Lesha has very little time. This message scattered along Facebook, and then a miracle happened. The vocalist of Scorpions, Klaus Mine, called Lesha into the ward and said that since Lesha could not be at the concert, he would sing him on the phone. And he sang, and Lesha tried to sing along, although there was not enough breath. And all 20 people who were in the ward cried. Then Lesha will say that he is incredibly happy. And Lida will write great gratitude to all 5 thousand people who connected to this story and helped to reach the organizers of the concert.

Such stories. About life. I think that these thousands of strangers, joining the life of Lesha Anichkin and Marzhan Sadykova, inevitably influenced their own.

Without a state

Nevertheless, most of the Lydine posts are not about gifts. Although how to see. Is it possible to consider a medicine, probe or an oxygen concentrator, without which physical pain will increase, which means that the quality of life of a sick child will significantly deteriorate - a gift? And yes, and no. Because adults are required to save children from pain, if it is impossible to save from death. And this is not a gift, but a duty. But if this debt remains unfulfilled, then gifts - the steam locomotives of Chaggiton, helicopters and iPades - are also not needed. The strength should remain for the joy. And it turns out a vicious circle in which Lida Moniava and her colleagues beat.

In August, Lida will write for those who think that "we are engaged only in gifts." “Most often, the work looks like this: we call families and ask what is needed for the child. They tell us: seni diapers 1st size, probing “nutrini nutrication” with dietary fiber, tracheotomic tubes, silicone probes, size 10, with a universal connector, vacuum aspirator of Armed 7-D, aspirated catheter with vacuum control, 8th, 10th and 12th size. Oxygen concentrator with a minimum noise level and a maximum amount of oxygen per minute. Foam for washing in bed, lean cream, ointment with zinc. Anti -war, analgesic drugs. Invalid chair with a folding back or, conversely, the lightest, simple-sustainable. Wet napkins without smell. And there are still 8 funerals per month, but you won’t write about everything. ”

If someone thinks that the state provides these needs to the child, then he is mistaken. The state according to an individual rehabilitation program can provide 3 diapers a day, and you need to write an application for a wheelchair and wait a few months. Children have no wards, these months. And the opportunity to place the child in intensive care, where there will be a free catheter, empty ward and strangers around - parents do not need to offer. This is not an opportunity, but savage.

Therefore, money and volunteers are always needed. Go to the website of the Vera Hospice Fund - there is written in detail there.

Help "New"

The children's program of the Vera Hospital Hospital Fund supports 60 families with incurably sick children who live at home with parents. There is no specialized children's hospice in Moscow, they plan to build it in the coming years. Half of the families with whom the fund is working does not live in Moscow. There are children from Lipetsk, Kaliningrad, Ingushetia, Krasnodar Territory, Karachay-Cherkessia, Nefteyugansk. Every month, about 3 million rubles must be collected for all needs. But here they will be very happy and the help of volunteers. It is constantly necessary for someone to deliver medicines and equipment from pharmacies to addresses, bring children and their parents to the hospital, if necessary, sometimes just came to the family. Here they will be happy with any participation.

Details - on the website hospacefund.ru and on moniava.livejournal.com