Two terminators

Vitya walked uneven from childhood, raised his legs poorly, but the doctors did not make any diagnosis. Vita was very bad at the age of 14, when his mother died in his arms, and he and dad were left alone. And several weeks ago they got to the rehabilitation camp of the MoMio Foundation

Help mymio fund help

“Vitk and I are flying - where we fly, why we fly, we did not immediately understand! - Whatever Eugene tells, the listeners are immediately gathering, he actively gestures and laughs a lot, and people around are laughing. - They flew - an honest mother, we are already met! Only there was no red carpet, everything else was, I answer you! They visited Red Square, rolled in the subway, you have athletes with parking, an honest person in the Merce center there is nowhere to stick his own! And they managed to the Poklonnaya Mountain, there the biker turned their engines turn on - Vitka froze all, her eyes burn! ”

The seventeen -year -old Vita on Poklonnaya Gora liked more than on Red Square. When a wheelchair jumps down the paving stones, the back hurts a lot. But my father and son still wanted to get to the Kremlin, they realized that there may not be another chance to see the main Moscow attraction with his own eyes.

Hut on chicken legs

The village of Troitsky, two hundred kilometers from Yekaterinburg, where Eugene and Vitya live, is not remarkable. Closed alcohol factory, working dairy. Milk, they say, is good, environmentally friendly. As you proudly write on the plant’s website, "you will not find a single industrial enterprise within a radius of 120 kilometers." With work in this radius, about the same as with industrial enterprises - it is not. There is a “piece of iron”, a railway station on the Trans -Siberian Railway. “New Urengoy - Yekaterinburg”, “Chita -Moscow” and a dozen more trains - at the Talitsa station, they all stop for exactly two minutes.

It was “on the piece of iron” that Eugene worked for many years, and now it does not work anywhere, because it is prohibited. Zhenya has a pension for caring for an incapable and minor disabled person, abandon her, go to work for a full day and he cannot leave Vitya without supervision. He tried to work, in two months of work he received a fine for an astronomical amount of 70 thousand rubles from the Pension Fund for the family.

Victor in the camp of the Moymio Foundation in the Kaluga Region Photo: Vasily Kolotilov for TD

“The child and I have several months, two hundred rubles, we just occupied bread,” says Zhenya. - I went to the pension, said, well, go towards, look at our situation. At least not immediately give this fine. They say they are very sympathetic, but they cannot help us with anything. ”

"The child and I are several months old, for two hundred rubles, we just occupied bread"

Relatives cannot or do not want to help - Eugene is strongly offended by them. “While the kid was normal while I was normal and I earned money - everyone needed me! - says the man. - Come on barbecue, Zhenya, we will make, take a walk, Zhenya, have fun. And then it cut off, not people, but a hut on chicken legs. ”

I ask why the hut. And therefore, Zhenya says that as soon as something happens-people turn backwards. He says that his native aunt Viti is often among their neighbors:

"I see her, she says:" Oh, Zhenya, how is Viti's things? " Yes, you go, I ask her, here he is, next. He sits at home, will not run away anywhere. Native business is not before us. But they,-Zhenya nods at the volunteer of the MoMio Foundation, which is chatting with Vitya in the distance, for some reason there is. I don't know why. "

On their own

Vitya walked uneven from childhood, raised his legs poorly, slightly rolled up on his parental hand. There is no children's neurologist in the village of Trinity and the nearest city, and the pediatrician said that the boy “develops a gait”, “lazy”, “weak”. At the school, Vitya was not that mocked ... “They didn’t treat it very well,” Eugene diplomatically, but then he couldn’t stand it and tells how specially pushed and laughed when the boy fell, how Vitya once successfully fought off the offender with a cane. From a certain moment, the boy managed to walk only with an additional support.

“Finally, everything went up after the injury.”

I thought we were talking about some kind of fall, but Zhenya has in mind the injury is not physical-when Vita was 14, his mother had an epileptic seizure. Eugene unclean his wife with a spoon, left his son with her and ran to call to the ambulance. It didn’t work out from the mobile, the stationary did not work - while it was rushing about, the need for the doctors disappeared, my mother died with Viti in her arms.

For several months, dad and son lived alone, and then Vitya fell on the road from school and could not get up. No one helped the young man. Eugene says that a relative drove past and even stopped the car.

“Vitya, says what are you lying? And he is proud of me, says: "Tired, here I am lying!" She left, can you imagine? Well, you see that the child is lying on the road, lying in the mud, well, would you leave?! ”

Victor (right) and Eugene in the camp of the MoMio Foundation in the Kaluga Region Photo: Vasily Kolotilo for TD

Zhenya drove the boy to the local hospital - there, finally, was a neurologist from Tyumen.

The specialist is invited for a couple of days, they show him the children, then he leaves back. He cannot write out any directions for treatment, another area. Or does not want to - someone else's site, other people's children, someone else's responsibility.

Eugene robbed all the thresholds, settled in the office of the head physician, begged, scandalized and achieved his own - he received a referral for examination in Yekaterinburg.

One -way road

“I came to Sverdlovsk with a child that the doctors told me there - you can’t imagine. How they are me ... I stand in the hospital-and for some reason I have tears not like normal people, but from here-Zhenya points to the outer corners of her eyes. “But I thought that I have no tearful glands with my life, everyone ended.”

"And I thought that with my life I have no tearful glands, everyone ended"

Doctors were indignant that no one has been engaged in the child for so long that there was no medical history. Vitya was urgently put in the hospital. When the next day dad appeared with his son with pies and slippers, he was called by the head physician.

“He tells me, this disease is not treated. Yes, I, I say, realized that he will not go like everything. And the doctor: Do not walk ... He will not live like everyone else. The road is one way. I ask, and we have another, or something, what end is expected? And he took his son. "

Zhenya began to formalize Vita disability. The disease overtook Zhenya - when the IPR managed to enter the crutches with an emphasis under the elbows, the boy no longer walked when they made orthopedic boots - did not get up. For some reason, the usual wheelchair for some reason was not brought, but the electric one was obtained.

“The driver brought some boxes, I say, man, you at least help help. A good person turned out to be, he was not obliged, he could even throw them out in the snow and say: "I took it - the matter did." They dragged, collected, connected the battery - Vitek sat down and went! Basco, Basco in this stroller!

Basco is good, beautiful. Vitya fell in love with a walk. Once with a father, once with a girlfriend, a former classmate. Victor is an ordinary teenager, so Zhenya is not aware of his affairs.

“I ask you, you show it to me in the photographs of your schools at least, I wonder! And he - so, dad, that's it! Normal kid, like everyone else, - laughs Zhenya. “I haven’t reported mine either.”

Victor at the appointment of a doctor in the camp of the MoMio Foundation in the Kaluga Region photo: Vasily Kolotilov for TD

Several families are sitting in a wooden arbor of the rest of the rest house. The weather is just right for a relaxed pastime - the sun breaks through pine trees, screaming a frog in the background. From time to time, one of the parents with children is called to the corps-and Zhenya gets up to help roll up a wheelchair on the steps. He should not lift weights, in the injured back - metal structure. But he, of course, raises, also jokes: “What, Vitek, you and I are two Terminators, right? Everything is in the gland! " Vitya rolls her eyes and says: "Well, Pa-Aap!"

Not according to the standard

Families from Orenburg, Perm, Bashkortostan and other cities of our vast country arrived in the spring rehabilitation camp of the MoMio Foundation. In 2014, Olga and Pyotr Sveshnikov and Elena Shepard began to systematically help families where children are sick with myodistrophy (muscle dystrophy) Duchenne. The fund is also engaged in other severe neuromuscular diseases, but the main focus is precisely this rare and rapidly progressive disease. Only boys are sick with them. A breakdown in a genus deprives a person's ability to move, muscles die and a person simply does not have the strength to move. First, walking worsens, then posture, then cardiomyopathy develops, damage to the heart. An ordinary cold can become a deadly for the body, broken and bent.

I ask Elena Shepard what medical centers are engaged in myodistrophy of Duchenna. “The Moscow Research Institute of Pediatrics and Surgery, the Moscow Regional Hospital,” Elena lists and smiles sadly to the question about the province and other federal centers. “In the regions, such children are placed in a regular hospital at best and treated according to the standard of medical care by profile neurology.” That is, they make injections meaningless in this case and physiotherapeutic manipulations.

In the camp of children, experts are examined, final diagnostics are carried out, and “road map” is also given recommendations - when the disease cannot be cured, it is very important to understand how to live with it at all. This directly affects not only the quality of life, but also its duration. By about ten years, children need crutches, by twelve - a wheelchair, from adulthood, patients experience respiratory disorders. Death occurs on the second or third ten years, but in the West this border is slowly moving away-there are patients who have lived to forty and even more years.

When the disease cannot be cured, it is important to understand how to live with it at all: this affects not only the quality of life, but also its duration

In Russia, patients with myodistrophy, according to world statistics, should be about four thousand. The fund has 242 wards now. How many years children with such a disease live as they live - no one knows, there is no reliable statistics in the country, it can only gather at the state level. This is not interesting to the state.

Victor in the camp of the Moymio Foundation in the Kaluga Region Photo: Vasily Kolotilov for TD

The doctor comes out of the body to rest between the tricks, lights up, listens to the conversation. Eugene, who endlessly balaguring all day, quietly and seriously says that in fact Viti does not have a myodistrophy of Duchenna.

“SMA with him,” the doctor intervenes. - Spinal muscle atrophy, middle form! How is our singer, who was not allowed on Eurovision, you know? Here is the same story.

- And what, SMA and myodistrophy Duchenne are such similar diseases that they can be confused?

“Everything is possible,” the doctor says concisely. - If not diagnosed normally.
He throws out an undercorn cigarette and goes into the corps, three more families await him. The conversation with each of them is detailed and detailed, it takes a lot of time.

Together is not scary

“When the doctor told me that this was not Duchenn, I didn’t sleep the night, I thought, it turns out that I deceived them? These people who have done everything for us? "

Eugene could not calm down in any way, although the organizers more than once explained to him what exactly for this-for the correct and final diagnosis-a family where there are children with severe neuromuscular diseases, brought to this camp. It seems that he is most amazed at not a changed diagnosis, but what about him with Vitya in general is dealing with someone.

The MoMio Foundation is the only fund in Russia, which specializes precisely in Duchenne's myodistrophy, so they have to do everything. This is targeted assistance-children buy vital devices and devices, consumables for them, organize legal support to families. This is educational assistance - the life of a child with Duchenne's myodistrophy on the operating table will depend on whether or not an anesthetist of the article in English -speaking scientific journals, whether inhalation anesthesia can kill a person with such a diagnosis. There is simply no educational module for this disease in Russian medical universities, therefore, the fund's forces are translated, manuals are written and distributed.

Victor and Evgeny in the camp of the Moymio Foundation in the Kaluga Region Photo: Vasily Kolotilov for TD

And there is one more, the most important program of the Momio Foundation, which we collect money for. It includes rehabilitation and integration camps for children with myodistrophy Dyushenna. What to do when you learned about the fatal, incurable disease of your child? In spring and autumn, families who learned about the diagnosis of their children come from from all over the country. The examinations alternate with the educational lectures of the best specialists in the field of Duchenne myodistrophy. Psychologists work with parents individually and in groups.

“I didn’t think,” says Zhenya, “that I will sit and discuss my problems.” You know, at first it neighing directly from this. I am sitting, so important, in a chair, I think how to talk about us. Well, we ourselves, two men in the same den, live and live, do not complain about life ...

He waves his hand, falls silent.

- Zhenya, then?

- And then I was released. It became easy for me, do you understand?

The program is called "We are together." So that in the summer the integration camp will be held, and in the fall, rehabilitation, so that dozens of families learn how to live, how to help their child and for themselves, needs money. Please help.