Life. To be continued ...
HE SURVIVED.
If there is no faith, then nothing will happen ...
Life is beautiful, but too rude to a person - this is the exact formula for an incurable genetic disease. For example, the term "butterfly baby" sounds serene and fabulous, but in fact the disease is called "bullous epidermolysis". With such a diagnosis, a rare, unseen child is born, a sensitive being, and here are his rewards for meeting reality - blisters and ulcers on painfully thin skin, bandages, bandages, nerves. The world, as if deliberately trying to damage the pollen on the wings of a human dream, lands, does not flutter.
Lyudmila Tymoshenko, this is well known. Here she is young, full of strength, plans and desires, but it all comes down to the fact that twice a day she makes bandages, fourteen years in a row, as long as her son Rustam lives. Tears, bandages and money - that’s all life. Almost 25,000 hryvnias a month are spent on special bandages. Doctors’ tests and advice are all dreams. Well, at least public organizations and charitable foundations such as the Fund help. What is it but gravity, what is the beauty and magic of these days? Yes, at least in what the doctors said: the child will not live. And he lives. This is what Lyudmila Tymoshenko and I are talking about.
"We did not think or guess that the child has a genetic disease, it is not diagnosed during pregnancy. And in general, everyone always thinks that they will be fine. Well here. I had a caesarean section, I was under general anesthesia. The doctor took out the child and said: you know, for some reason he has very thin skin and he was very heavy. And then I’m in intensive care and he’s in intensive care. They came to me and said: the child has congenital complications. I couldn’t even imagine that things would get worse in the future. Everyone, of course, was shocked, trance is such a state. It was necessary to accept all this, to realize it somehow. I don’t even remember how much time passed before my brains somehow fell into place.
I saw the child on the second day. He seemed to be so clean, only the handles and legs were bandaged. But when he lay in intensive care for two weeks, he got worse and worse every day. He was born so dense, good, under four kilograms, and then there were three hundred of him left when he gave it to me. He was already in such a pre-death state, all in green. Not that green, but right in the burns, in the crusts of such, burnt wounds. The doctors burned our child, it was impossible to treat him like that, categorically. How are we doing? To make the ulcers dry, all medicines are for this. And then when we were diagnosed, on the contrary, they say that with this disease, the skin can not dry, it is too thin. Well, what do we have ... They said: he will not survive with you, that’s all.
And how to be here? You will not sit and wait for him to die. They began to fight. I started looking for information on how to deal with this whole situation. It turned out that you need special bandages. For example, Swedish, which are sold only in Kiev. They cost a lot of money. And it is necessary to bandage elbows, legs, fingers twice a day. Need more ointments, creams… The whole pharmacy. Now it turns out that all this costs about 25 thousand hryvnias a month. And it was necessary to understand where to get money, how to arrange the purchase of all these drugs ... So we started bandaging him very late…
It took a long time to get a disability. And in general to get what we deserve. For example, the state law says that the regional budget should help us with dressings. Nobody was going to help us. They said: here we can give you ordinary patches, cotton wool and bandages. We began to write letters, seek help. In the end, we got a call and were told that the chief dermatologist of the region would come. She came, looked, only after that they helped us a little. And then the local hospital says all the time: next Wednesday we will send everything. Then again: next Wednesday ...
It soon became clear that Rustam was not alone in the world. Information about bullous epidermolysis, an unknown disease with a complex name, was collected piecemeal until we learned about the first in Ukraine specialized medical office for patients with bullous epidermolysis - "butterfly children". Medical institution opened on the initiative of the International Public Organization "Dermatologists - Children", the Center "Debra-Ukraine" and with the support of NDSB "Okhmatdet". It is here, now Rustam receives the necessary professional medical care.
We arrived in Kyiv, passed all the tests. The doctor told us that our form of the disease is dystrophic (one of the most severe), and there is not enough protein in the body, that there will be complications such as splicing of fingers on the hands (
Since then, we know what we are fighting for. We know that we are not fighting in vain. And how else? I think this is how life works: if there is no faith, nothing will happen. Here I believed that everything will work out for us, everything will heal. And so it happened. I was told that the child would not survive, but he survived, and he has a dream, to be healthy, he has faith, we have us. "
Author Roman Betsenko
Photo Denis Zagorsky