Wild Dan and his team

When Denis was diagnosed five years ago, his mother decided that life was over. Now she says: "We are very lucky - we met a lot of good people"

We help Vera help

"Best Pirate"

With Denis is interesting: he talks about his favorite books, computer games, dinosaurs and his friends, Andrei, Sonya, Kira.

“Where did you meet them, Denis?”

“At school,” the boy answers with dark golden hair, sitting on a special chair with a stand, which can lean his head on, if necessary. Denis can be hard to keep her.

- At school?! “I try not to look too annoyingly to his thin arms and legs.” Denis cannot walk himself - and he could never.

- Yes, she's. It can be seen in the window, ”says Denis and quite energetically shows me somewhere behind me.

Denis with brother and cat photo: Anastasia Rudenko for TD

I turn to the window and through the green stalks of the flower in the pot I see a lit three -story building behind the neighboring apartment building. And then in the room, where Denis and I are talking, shifting from side to side, the one -year -old Misha, the younger brother, runs up.

- Denya, Denya! He says clearly.

"Deni" calls Denis Sorokin's home. School friends call him a wild Dan, which Denis himself proudly tells me. When I hear this nickname, on my face, apparently, such a surprise is reflected that Denis, restrained until then, snorts and smiles. And I finally notice a letter in a closet with the inscription "Best Pirate."

“I love adventures,” he says. - And I don't like all sorts of horror stories. I’m only nine years old, I’m scared for now.

"It seemed that life was over"

Adults are scary much more often than children - Denis does not yet know about it. But his mother Olga knows well. He and Ivan, Denis’s dad, had to experience a paralyzing fear for the child and a feeling of powerlessness, the impossibility of changing something. This fear appeared when Sorokin was declared a diagnosis of his son: spinal muscle atrophy of the second type. SMA is a progressive, so far an incurable disease in which all the muscles of the body, including the muscles of the lungs, gradually cease to work, and a person stops breathing on his own.

Games at a change photo: Anastasia Rudenko for TD

The fact that something was wrong with his son, Sorokins understood when he was six months old. Denis began to weaken. All doctors said that it was children's cerebral paralysis.

The boy never got to his feet - there was a time when he could stand with support, in a verticalizer. Then he stopped, despite all the efforts of his parents. When Denis was already three years old, the orthopedist recommended that the child be taken to a neurologist. Sorokins went to St. Petersburg, because in Vologda they have already bypassed all specialists. “In St. Petersburg, they immediately suggested that Denis Sam. We sent us to the hospital, for tests. And the diagnosis was confirmed, ”says Olga.

Nobody explained to Denis's mother what SMA is. They simply gave out the results of analyzes with the name of the disease - and that’s it. Olga panicked from exacerbated information about spinal muscle atrophy: “It seemed to me that life ended, because on the Internet five years ago it was written only about the bad, the most negative forecasts of the course of the disease were given.”

This expensive Denis and mother have been going to school photo: Anastasia Rudenko for TD

For the first six months, Olga could not discuss her son’s diagnosis with anyone - immediately began to sob. She herself began health problems - nervous breakdowns, hair loss. “I added for ten years, probably,” she says. He recalls how she was offended by her husband, who very restrainedly experienced a difficult period: “He is just the shore of me, as I later understood. Then he had to remain outwardly calm, work. If we both hysterical, then there would be nothing good. ”

Then Ivan worked as a builder, but in order to accompany his son in a stroller to school, he got a job at the store - it is important for him to have a flexible schedule and the opportunity to be at home if necessary.

"Let's see what can be done"

Now, talking about the illness of the son and the present life of her family, Olga smiles. She can talk about grease for a long time for a long time. Sorokins believe that they are very lucky - they learned a lot of good people since Denis was diagnosed.

The exit from the crisis began unexpectedly - with a phone call. They called from the Department of Education - to remind you that it was time for Denis to the kindergarten, the line came up. “I was very angry then,” she recalls. “It seemed to me that they were mocking us, I thought:“ Are they really not interacting with the Ministry of Health?! ” And then suddenly called the head of the kindergarten herself. I again began to explain to her that we have a special child, he does not walk and that everything is bad and will be even worse. But she said: “You still come, let's see what you can do.” I suggested that we come with Denis for half a day so that I was next to him. ”

Denis is looking for a girlfriend behind the school building photo: Anastasia Rudenko for TD

Mom and son began to "go into people", Olga cheered up. I met my parents with disabilities - and after communicating with them, I realized how important it is not to close in myself, to move forward. Move despite fear.

When you cease to be afraid, even the information on the Internet is suddenly positive - Olga found the mention of the Charity of the Family of the SMA and his project “Clinic SMA”. I signed up for one of the Moscow clinics, where it was possible to consult with spinal muscle atrophy experts - and here I learned about the Vera Hospice Fund for Help, which helps incurably sick children in the regions of Russia.

“I wrote to them, without really counting on anything, and suddenly received an answer, the Vera Foundation took us under its wing,” says Olga. Denis was given the necessary equipment for emergency situations for free - from a non -invasive ventilation of the lungs to a pulsoximeter that measures the level of oxygen in the blood.

Photo from a family album

Another fund gave the Sorokin electric stroller - Denis himself can control it and feel independent. Such a stroller is a huge help. A chair that the state issued a bulky and clumsy, a few years ago, you do not chase school corridors with friends with your friends. Yes, and you can’t get to school, even accompanied by adults.

Do what is conceived

They love Denis at school - and he himself likes to study. The administration of the school, which is completely unsuitable for the student in a stroller, is humanly related to the features of Wild Dan-and this, according to Olga, means much more than any lift.

In the first grade, the friends of Wild Dan invented the vying of how to cure him, offered different options, so they wanted a boy who, in an intellectual development from them, would stand up and start to run the same way as they were. “Now they have calmed down a little with this idea,” his mother says. Maybe Denis’s friends will have to come up with a way to transport a comrade to the second and third floors of the school in the future where high school students study.

“When it was time for Denis to go to school, relatives persuaded him to leave him for home schooling, scared that other children would be cruel with him,” says Olga. “But fear has great eyes.” We decided that we don’t have to be afraid: you just need to make a decision and do what we planned. ”

Denis on the couch in her room photo: Anastasia Rudenko for TD

The method works. Denis himself does not feel at all incurably sick. Most of all, he likes to draw and respects strict teachers who can calm his noisy classmates and explain the subject qualitatively. He likes to swim in the pool, play with Misha’s younger brother. The confidence that everything is good and correct is inspired by parents who, in turn, know: they have someone to rely on - the Vera fund will help and prompt, support and will not leave one on one with trouble.

So it should be. And in order to be so, we need our help. The support program for inconspicuously ill children from the regions of the Hospice Foundation "Vera" works for charity donations. If we drop by 50, 100, 200 rubles, the joy in the eyes of Wild Dan and his parents will be a reward to us.