Earthly bow

At six months, Vitalina began to bow. It will bow, starts and looks aside - in the eyes a booming unearthly emptiness, lifeless cosmos. About twenty minutes later, the void passed, fell until somewhere in the backyard of consciousness, gained her striking power-and again bow. Then three, five, fifteen. Without a break. On a thin children's neck, Vitalina's head darted like a bell in the wind, darted and shouted: “Ahhh!”

It is difficult to convey this animal howl with letters, which stuck in drum membranes for a long time. The neighbors came in, asked to stop, then they saw the “bell”, were lost and asked how to help.

“ Then I did not know what - I walked like a pendulum, from corner to corner. And prayed. And now I know: we need Sabril. Because for my daughter “Sabril” is equal to life. I do not exaggerate, although it would be better if it was so, ” Victoria Potapova straightens silver hair. Vika is 35 years old, three years ago she turned gray.

Leaves on the body

Vika, Lesha, Batik and Vitalina live in the village of Petrovka. This is in the steppe Crimea. Petrovka is cut off by the railway from the village of Krasnogvardeisky. In the Krasnogvardeisky, just opposite the Potapov’s house, a district hospital. The one in which they did not know what to do with Vitalina and her annoying family.

It is a family, because for three years for the life of their child they are fighting together.

In the courtyard of the house photo: Sergey Melikhov for TD

“ We have been waiting for Vitalin for five years. And this pregnancy was a holiday for all of us. Lesha, my husband, how crazy has gone - as if the meaning of his life was now in my stomach. Yes, and me too. I decided to conduct pregnancy, as it is written in books: zero stress, proper nutrition and fresh air. I then worked in a fruit company, and everything turned perfectly: the analyzes are beautiful, the births are light. There were no prerequisites for what happened next. Mom only said: “Some kind of girl is amazing: silent too, calm, children are rarely like ...” ” ”

Three months later, Vitalina began to smile strangely. Unnaturally, as if someone invisible stretches out pretty children's cheeks in an evil clown grimace. Then the empty look and the very bow that threw the baby from side to side was added.

When this happened for the first time, Lesha drove his daughter with his wife to Simferopol. All the way Vitalina bowed and screamed, and when they got, exhausted from this hellish dance, hung on her mother’s chest and fell asleep.

" You overfeed it, the child has a stomach, ”a neurologist handed a piece of paper with a recipe. - Let’s less food. Next! "

But Victoria did not leave. She was both the next and subsequent, until she received a referral for examination of the brain. They revealed epileptic disorders, prescribed the drug and promised that in a month or two everything will be formed by itself.

But it was not formed. It became only worse: the attacks were longer and more often.

Vitalina plays in her room photo: Sergey Melikhov for TD

" We lived all the time in anticipation: when will it begin and how will it end? Nothing helped. I just did not think. She even went to the priest - she asked why we, young, healthy, have such a punishment. He said that this is not a punishment, but a test and if you accept it and believe him to help from above, then there will be a way out ... "

The clue appeared on the girl’s body with whitish leaves. Vitalina was then 11 months old. And the next doctor guessed - this is tuberous sclerosis. A rare genetic disease that happens with one of ten thousand people. In the Krasnogvardeisky, the population is a little over ten thousand. Therefore, Vitalina Potapova here is so alone. With leaves.

Here this is not treated

Leaves are light, almost white, as if etched by chlorine, spots on the skin. In shape, they resemble prints of the foliage of a plant. Bell, for example. And they symbolize the disease that affects the nervous system and the tumor smells into the body of a small person. That is, the leaves are harmless. And the tumors are very dangerous. They, like poisonous berries, ripen in Vitalin's body: two in the head, one in the heart, in the kidneys, in the liver. The growth of these toxic berries can be stopped with drugs or removed (tumors with tuberous sclerosis are almost always benign), and the attacks are stopped by Sabril. This Victoria found out later. And then she dragged a bending, endlessly bowing daughter in the Crimean hospitals and listened to “letting go of the situation and give birth to new ones” and about “we didn’t encounter such a thing, we will try something.”

Vitalina with grandmother photo: Sergey Melikhov for TD

“Will you try it on my daughter? He will die - will not die? Will go crazy or not? " - asked Victoria.

In those days, she generally asked a lot. Because I heard badly - the sharp and merciless cry of her child constantly sounded in her head.

“One of the local doctors, give her a god of health, finally said: this is not treated in Crimea, you need to look for a doctor in Moscow. And we found. At the Institute of Pediatrics. It remains to collect money and go, ”Victoria says this with visible relief and adds:“ On September 1, 2014, we began a new life. ”

With outstretched hand

“Collect money” for the Potapovs is to pass with an outstretched hand along Petrovka. The farm is not rich. A house with gas is already a luxury. Potapic gas, for example, does not. And the house is such that the cap is scratching the ceiling. The rooms are almost toy, but they will heal well. You can do with a hill of coal and a pile of firewood in the winter. Five years ago, Alexei decided to be built - he brought a brick car. Vika then worked as an accountant, counted the Debit Credit-they fit. But after the birth of Vitalina, it became clear that there are things and more important than square meters and warm floors.

Vika settled at home, the grandmother’s pension and the salary of Lesha remained - 22 thousand rubles clean. They live a five of them. The family still has a senior son.

Vitalina plays in her room photo: Sergey Melikhov for TD

“We borrowed about 100 thousand to Moscow, and gave it in a year. And we regret that we missed the time, did not turn before. If we were immediately appointed “Sabril” and stopped attacks, then Vitalina could be much healthier. Each attack hits the cells of the brain, it seems to bake them. And the child rolls out in development ... Wait, it seems, the daughter is coming, ”Victoria puts her finger to her lips.

Alexey rises. All the time of our conversation, he sat on his knees on the floor, his head was lowered, his hands could not find a place: they collected non -existent crumbs from the carpet, adjusted the cloak on the couch. Then Alexei did not utter a word. Only on the story of the search for drugs came out - a tear -shaped veil hung in his eyes.

Vitalina entered the room. It has tiny fashionable jeans, colored hairpins in the hair. The girl looked at me in bewilderment, and then laughed. The voice is sonorous, rampant, as if the bell rings. Parents exhaled: every new person for Vitalina is stress. And stress is a provocation of the attack. But now everything went well. And this is a great success.

The batik swims behind Vitalina - with the light hand of her granddaughter, so now they call Lyudmila Ivanovna, mother Victoria. The batik is assigned to a member of toy sorting. Vitalina examines every plush character, and then handed it to those who, in her opinion, deserves it. The most beloved - a cat and a rabbit - went to grandmother. Several bears fell to his father. Vika and I have been surrounded by gifts.

Vitalina plays in her room photo: Sergey Melikhov for TD

“So, in Moscow we were appointed“ Sabril, ”Victoria returns to the topic. - And after the first pills, the attacks passed! The daughter stopped bowing, bending and screaming. So it was a day, two, a week. Over the months of round -the -clock torment, I could already determine when this nightmare began when this nightmare began. And suddenly nothing. We lived on tiptoe, were afraid to make an extra movement so as not to frighten off. No, the attacks returned over time, but they are no longer at all! Vitalina is now just freezing, she is conscious. Not screaming. She no longer hurts. In a year and ten months, her daughter went, now she is four, albeit late, but she says and understands everything. And this is “Sabril”. In Russia, it is not registered, and this is our main problem. The drug is not officially prescribed, they write: “recommended”. I found it on the Internet through a group of parents “tuberous sclerosis”. One of the mothers travels to Poland and buys “Sabril” to his child and us, and then sends him by mail. This is not cheap - 5.5 thousand rubles a pack, and we need two packs per month. Throughout life. Moms at the forum are advised to purchase in bulk in order to save at least at a postal shipping. But we won’t pull it wholesale - very expensive. ”

Should, but do not give

At the same forum, Victoria read that Sabril should be given to her for free. And that the Ministry of Health of the Russian Federation should issue permission to import a specific batch of unregistered drugs for those patients who need it. But at the request for the drug, Vika received an unsubscription in which the Crimean Ministry of Health informed her that he considers the use of this drug inappropriate.

“That is, there, in a large beautiful office, a man who has not seen my child in the eye is sitting. And he suddenly makes such a decision. Moreover, the recommendations of the Institute of Pediatrics are not interested in him. During these three years, I have already sent so many letters to our officials from medicine that even according to the style of refusal, I can determine what kind of person answered me. There are a lot of them there, but one unites all - indifference. Do you know what they write to me? Charity funds should deal with the issue of providing my child “Sabril”. Or ourselves: our child is our problems. Something like that. "

Victoria goes to the closet - there is a shelf, divided into two parts. On the right - medicines, on the left - folders, history of the struggle for life.

Vitalina plays in her room photo: Sergey Melikhov for TD

“I am naturally optimistic, I try to swim even in the most difficult situations. Therefore, I came to the forum of tuberous sclerosis. And the girls write to me: do not give up, we have a “patronus”. I did not know then that somewhere there may be lawyers who are worried about to help such as me. There, I found out that in Ryazan three mothers, thanks to the “patron”, won the Sabril case. And after that, everyone who sought this drug in that region received it without problems! That is, the officials realized that it was easier to do, which was supposed to be not to be judicial red tape. I dropped our links, took books. But so, apparently, a person is arranged: until it personally touched you, do not spit on everything ... "

So Victoria wrote in Patronus. And lawyer Natalia Kudryavtseva responded to her request. She helped to correctly draw up a letter to Roszdravnadzor and took all the subsequent legal support in the Potapov case. Roszdravnadzor transmitted an application to the prosecutor's office.

“This is the situation when officials transfer their direct duty to provide the child with medicine to funds, which, in fact, owe nothing to anyone,” says Natalia. - Yes, and who should look for these funds, agree? Mother? The most unpleasant thing is that the Ministry of Health of Crimea ignores the orders of the Ministry of Health of the Russian Federation and the submission of the prosecutor's office. To date, we are going to court. This is the only way out. ”

When this text was preparing for publication, Victoria doubted: is it necessary to talk about what happened to them? Two years of quiet epistolary resistance clamped a person in a vice of uncertainty. But since there was already a lawyer nearby, who peremptorily said “necessary”, Vitalina's mother made contact. Now they have plans for a long struggle, and if Victoria does not give up, then the victory will be on her side. And this is not just a judicial victory, it is a life torn from under the plate of indifference.

Help everyone

The history of Victoria is one of the thousands that occur daily and will occur in our state. And in a situation where the earth leaves under the feet, it often seems that there is nowhere to go. But in fact there is - in "Patronus". They come to the aid of parents who need free legal support in the struggle for the rights of their child. Lawyers of Patronus go to the courts, write statements, help to correctly draw up documents and look for the same legal drawbar, which needs to be turned so that it comes out correctly.

The project has existed for eight years. During this time, Patronus won more than a thousand cases. And each time, going to a small war for great justice, the lawyers of the project resemble the heroes of the books about Harry Potter. Those same patronuses, magical defenders, who are called when there is a completely land. And magical patrones come at the moment when waiting for help recalls the happiest moments of his life and believes in a miracle.

Vitalina with mom photo: Sergey Melikhov for TD

Victoria Potapova has a lot of such moments. But she remembered one especially. This is when she, with a exacerbating Vitalina, came to the temple in her arms. She stood in the narthex and cried bitterly. And then the father approached. And he told the story of how a man in a stroller traveled to them for a long time. It was thin and weak. And everyone thought that soon this man would not come anymore - he was too bad. And once he really did not come. And he came with his feet. And the doctors could not explain this wonderful healing.

Victoria thinks that a miracle will also happen to Vitalina: she will take Sabril, grow and develop, like all children. Because there are people who want this. If you have a desire to help the family from the steppe Crimean village to get what she was supposed to be by law, support the Patronus project. To do this, you need to quite a bit: press the button about donations. The money that appears in the account account is to pay for the work of lawyers and for expenses related to many bureaucratic obstacles. By clicking on the help button, you also become a little patronus - you send the magic that turns the mountains to the world.