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Good afternoon, my name’s Lida. I work in the hospice "Vera" (“Faith”) foundation. I work with children who can not be cured. Mitya Aleshkovsky asked me to write this article. I sit at night on the weekend and I write because I'm scared, if all of a sudden someone really might wonder - if a child can not be cured, it can not be helped?
Next week our foundation has to raise two million rubles for two lungmotors - one for Kirill, and another one for Sonya. On Monday, we will publish online the story of Kirill, on Tuesday – Sonya’s. Kirill’s parents did not want any publications. They think that the citizens of their village hounded them – they gave a birth to a terminally ill child, and now they collect money. Kirill did not recover indeed. Neither with a device nor without it. Kirill and his brother Dania were born as twins and since their birth the list of their diagnoses takes up half a page. Danya lived 47 days and died without regaining consciousness. His brother Kirill survived. He is two years now. Kirill loves the cartoon about a fire truck and sleeps with two plush foxes. Kirill never learned to breathe by himself; therefore he had to live in the intensive care unit. Kirill never was at home. His grandparents saw him only on photographs for more than two years. His mother was allowed to see him only twice for five minutes for the first three months. Such rules exist in Russian intensive care units - not to let relatives in. And such rules of the national health care - if you can not breathe yourself, you will spend all your life in the intensive care unit. Or look for money and buy the lungmotor by yourself.
If next week we collect the money and buy a kit for a lungmotor at home, Kirill will move home. And the boy will not live in the prison regime of the intensive care unit but an ordinary human life - with his mom, dad, grandma and grandpa. Maybe they will get a cat. Maybe friends will come over for tea. Our hospice works with such children as Kiril. Sometimes I think that to make a child happy - it's much more than cure him.
I returned today from a recreation center VKC-Country. It is situated on the river Kirzhach in the Vladimir region, Russia. Recreation center’s owner helps hospice by hosting the staff of the hospice and our foundation for free, so we can recover there after a hard work. Besides families with our little patients come there - to have a good time. This time we were there with Lilya. Lilya is five years old, she has brain cancer. Lilya almost cannot speak and walks with difficulty. She had an extensive chemotherapy, irradiation was done twice. Cancer was progressing. We sat next to Lilya on the couch, on the tablet Lilya showed her summer photos. There she is a real princess - in a pink dress with a fan and in a hat. She behaves affectedly all out.
Today Lilya is different. In the morning in the dining room children whispered and pointed at her, "Look how her eyes mow down in different directions". It is good that Lilya could not hear it. Lilya is already very worried about her appearance, she is angry that even her mother doesn’t understand her tangled speech, she does not go to a children's disco and spends whole days sitting in her room with the tablet, which stores pictures of her happy summer. Curls, her dress, her bike... This tablet Lilya received from Facebook readers. I wrote once that the girl had an incurable form of cancer, and she dreamt of the tablet. Seven people offered to buy a tablet, three wrote that there was nothing to spoil the kids; they’d better think about their soul before dying instead of playing computer. Thanks to you Lilya has this tablet. It is a real salvation for her. Lilya, by the way, showed me a picture of the doll about which she dreams now. The doll, if you press on the abdomen, really pisses. Tomorrow I'm going to write on Facebook about how the girl Lilya dreams of a doll. It will be good to find at least one person who, like me and Lilya’s mom, knows that there are times when to buy a doll - it is not less important than to buy a medicine...
I work for the charity foundation, but I can not do anything by myself. I have a mobile phone, on which parents call every day and tell their stories. Someone cries, someone tries to speak officially, because to ask for help - it is a humiliating thing, but you can hide with your business tone. I have iPad on which I can write and publish their stories on Facebook. I have nothing more. Everything else is in your hands. To help people - it's not a profession. This is our common life. These children - Kirill, Lilya and a hundreds of other children, with whom our foundation works - live among us. Anyone can have a child who is terminally ill. If we are the people, it is our responsibility – how Lilya and Kirill will live. Our responsibility is not to wonder - why do we need to help those who can not be helped? It is always possible to help.
Lilya needs a doll that pees, if you press on her stomach. Kirill needs a million rubles to buy an equipment lungmotor at home. Their families need volunteers to go to the grocery store.
The website of the hospice "Vera" foundation where I work - http://www.hospicefund.ru
My Facebook - https://www.facebook.com/lida.moniava
My contacts - email@example.com or 8 968 029 38 29
My name is Lida Moniava.
Thank you all for your help.