Baber kitchen

Choking and coughing, Daniel confidently talks about his plans for the future. Everything will work out, there is only one nuance - you urgently need new lungs

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“I was told that in the best case he would live up to 25 years,” says Natalya, mother of Daniil Bobrysheva, whose cystic fibrous was found at three months. - When he was born, we just started to engage in this disease. The best situation with the treatment of patients with cystic fibrosis at that time was in Germany - it was believed that they could survive up to 40 years there. Well, how could I get to Germany? "

Today in the West, the life expectancy of patients with cystic fibrosis is approaching 60 years. In Russia-16-21, in Moscow, half of the patients manage to live up to almost 40 years. Daniil is now 21. Constant treatment gave him the opportunity to grow up, go to school with his peers. He was a little shy about coughing attacks, but in general he did not feel like some other. Deteriorations began in high school, but Daniel did not pay attention to it and even took up powerlifting. While there were strength, he crouched with logs right on the territory of hospitals, despite the prohibitions of doctors. “I never conflict with him about this, but I was worried, sometimes I’ll start to mutter, that, they say, tribute, you are careful, and he is to me:“ Mom, thanks to this, I just move somehow, I live. ” And he took all the first places! "

Daniil photo: Julia Skorobogatova for TD

But three years ago, a dangerous microbe in unprotected infections, as often happens with patients with cystic fibrosis. Daniil was not lucky, he got an ahromobacter - a very aggressive bacterium that gets used to any antibiotics. Since then, Daniel’s condition worsens, he has also experienced open tuberculosis in an open form , pneumothorax is when a hole appears in the lung, and it is blown away like a ball. Now one small piece has been left from two lungs, almost all the time Daniel breathes in a mask, from which the walks on his face had already begun. Since November, he does not get out of hospitals, every step is given to him with difficulty, he can’t talk for a long time and has been standing in line for a transplant of the lungs for a year, which may simply not wait.

When it happens, it is not clear, a donor is needed with a rather rare - the third - a blood group. But the point is also in different legal difficulties with which this operation takes place in our country.

Daniil spends almost all the time in the room photo: Julia Skorobogatova for TD

It became impossible to engage in sports, only tattoos on emaciated knees remained from powerlifting, and Daniel became interested in culinary. “I generally wanted to become a cook, but a sanitary book will not be apparent with my illness. Therefore, I will cook at home and lead the culinary channel. The “Bober is called”. The nickname "Bober" became attached from childhood, in the gym was the name of Satan-Bobert, because he was killed in training and trained others to an unconscious state. When he walked with a beard, there was a “bearded beaver”, and always so. For a blog, they painted a picture with a beaver-boar. There will be original dishes of Daniil Bobryshev, I don’t cook according to recipes, there may be a separate section - a sports diet. ”

Once a prisoner of hospitals, Daniel devoted his channel on YouTube with cystic fibrosis and tells about it in all possible social networks. He frankly shares the details of his condition and struggle, even posted a video with the recently incident attack of suffocation . It was the strongest attack of all that he had ever had. “I barely pumped it out - in one minute the prednisone introduced it.” In the video, Daniel tells how the doctor on duty gave him phenosepam, because during suffocation there is an attack of panic. In general, it is obvious from his story that each such attack is an absolutely critical situation in which he and his mother decide how to act. “I can’t leave one at all, while the doctors come, maybe it's too late - if I go out to the corridor, always with the phone - he calls, and I’m running back with a bullet.” Saying on the blog that in the morning after the attack his legs were very swollen, Daniel says that it is approximately like "migrated from a jerk in a fat - a coup of shower."

Daniil shows his tattoos photo: Julia Skorobogatova for TD

Daniil generally often ironizes the situation: when he finished with inhalation and removed the mask, he was shaking a little, but he smiled and explained: “Do not be alarmed, it will be sausage from the medicine, it will pass after a couple of minutes.”

Almost every day, Daniel receives letters with questions that he always answers. “Recently, I’ve been trying to speak a simple language, without medical terms, so that those who have nothing to do with the disease, it was also clear. Parents often write from all kinds of remote villages, where no one even heard about this. I set them up not to despair, I tell you what to do. We also sometimes come from an ambulance, I say: “cystic fibrosis,” and they ask: “Is this something with the bones?” It’s very sad, I try not to be angry with anyone, but I have panic attacks, sometimes it’s hard to restrain myself. If I shout at whom, then I am very ashamed. ”

Daniil photo: Julia Skorobogatova for TD

Daniil stops shaking, and we discuss the possible routes of his future trips - of course, he wants to see the whole world! “Ideally, to go around Russia along and across by car. Then Armenia, Georgia, that's all. Then - China, Japan, other cultures are very interesting to me, I want to see with my own eyes. ” He talks about this as if he had a flu - here, the temperature will subside, and it will be possible to collect the bag on the road.

And Daniel also dreams of “creating his own branch of the genealogical tree”, but I do not have time to ask about it in more detail, because Natalya reminds us: we have to end. Daniel’s lungs barely enough for a half -hour conversation.

Later I called Natalia and said that I was delighted with her son's excerpt. “He is a competent guy, with a mathematical warehouse of mind and, of course, he had read about this sore for a long time and knows, maybe even more than others,” she began almost calmly. - He always treated steadily, but now he began to blow out. It was he who smiled at you, and yesterday and the day before yesterday he was just a terrible state: emptiness in his eyes, looks at one point, and so more and more often ... When he began to move poorly, he first asked me to help with cooking for the blog - wash the chicken there. I did everything, took out the camera, shot, learned to mount. I approved this very much and rejoiced that he was doing something, so that the roof would not go. But now we have not become at all to that, the situation is nowhere ... Excuse me, I can’t talk anymore, ”sobs were heard in the tube.

Daniel during the period of Powerlifting Photo: Julia Skorobogatova for TD

Daniel's day on antibiotics, which are needed to restrain the inflammatory process and wait for the operation, costs more than eight thousand rubles. And this is not counting the main drugs that he takes all his life. He needs almost 10 thousand rubles a month of the same creon. Part of the drugs is provided by the state, the rest has to be collected, because Daniel's mother was forced to quit work, but they have no one else. The Oxygen Foundation helps with the most expensive in the Daniel list with an antibiotic - a measure. In addition, the fund is engaged in social and legal support for patients with cystic fibrosis. Buys medical equipment, pays for trips of a service providing palliative care for patients in the terminal stage. The “need” fund collects money to pay for the work of these people. Any amount you translate will be able to facilitate someone's sigh. Perhaps this will be the last breath without pain, or maybe - the happiness of breathing in full chest, which we value so little when it is.

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Daniil's mother wrote to us that he died on August 17, 2020.