There is no longer enough air

Shakes the next child before our eyes

While watching the ether of the editor -in -chief of Novaya Gazeta Dmitry Muratov on Echo about children, sick SMA, I thought about the dragon all the time. Actually, his name is Dimka, but his mother calls him a dragon, because he is an absolutely incredible, fire-breathing guy. I and Dima are not personally familiar, but with his mother, Tatyana Sveshnikova, we are friends on Facebook.

Five years ago, on the website Miloserdie.ru, Tanya read the article “While he is alive” - about a boy who was transferred from a boarding school to a boarding school with the words: “Two months later he would die,” and immediately realized that this was her future son. Dima then from the orphanage for the summer was brought to the Marfo-Mariinsky monastery, where they met.

It was love at first sight. Tanya began the Marathon race at the instances to pick up Dimka from the misfortune that he got into. From there, where sick boys were put face in different directions (they themselves could not move), so as not to “blaspheme” where he was lying, tied to a grid of the bed without a mattress, and refused to eat.

At nine years old, he already knew from the nannies that he was “not a tenant”, and asked Tanya: “Why will all the children grow up, and I will die?”

Since then they are together - March 27 will be five years.

Naturally, in the orphanage, Dimka was launched terribly - he is all twisted, practically does not move. But he has a brilliant mind - such a future Stephen Hawking - and a fantastic sense of humor, often rather black. He understands his condition and can even joke about uniqueness and helplessness.

He calls mom Musy. Recently sadly told her:

“I have a cherished dream, Musya, and it will never come true ... And I dream for many years!”

Tatyana, thinking that he was talking about the desire to walk and about the forces that he loses every day, answered him hotly:

- I also have one - get into outer space! Not all dreams come true!

- No, well, your dreams have a chance, mine - no ... I dream about magic rings and I want to master the magic of fire!

In the meantime, it doesn’t work out with fire, the dragon studies at school on Skype and shouts ridiculously so that the family does not interfere with his lessons. Tanya posts on her page very funny photos, looking at which you will never think about how scared she is for him.

Here, a huge red -haired cat was perched on Dimych (maybe he is not so huge, but against the background of Dima a cat is just a giant), and they - nose to nose - are ridiculously staring at each other.

But Dima, wrapped in overalls and hats, lies on the ice of Lake Baikal. Under it, since the ice is clean and transparent, the abyss is visible, and goosebumps run on the skin. And he laughs. Tanya is asked: "How did you go to the Irkutsk region?" And in the tone of the question you can hear bewilderment: you are supposed to sit in a wheelchair at home and stare out the window. To which she easily replies: "Walking!"

Recently, Dima and Tanya were at sea, and she laid out pictures of how this heap of incredibly happy seeds lies on the sand by the very water and small waves run up to the boy.

From the first day, Tanya writes their conversations. Doctors gave them too little time, and it was important for her to remain the memory that such a guy lived. Such a man!

People often ask Tanya strange questions. “I took it and fell in love, right? It’s a pity that he will die? Scary, yes? " She says that at first she did not even know what to answer. And now he knows: “Scary. And sorry. And even worse and sorry if I had not taken it. ”

Every day, Dimka becomes weaker. Previously, he held his head a little, now I need a thug or Tanina's hands-she knows how to wear it so that her head holds. The other day, Tanya wrote: "On Sunday, Dimka could not move his thumb, and he has only four workers ..."

Tanya says that he could scratch his nose before, he could reach his stomach, and now he could not stretch his hands at all. I could sleep without Nivl (a non -invasive ventilation apparatus), then with a nasal mask, then with a rotonos - air is no longer enough, and you need more hours on the apparatus. I could turn on the stroller, put your hand on the remote control, if Tanya put his hand on the armrest, now he is waiting for his mother.

“I am not easy to come to terms with its weakening, but I try,” says Tanya. - And he completely heroically transfers it all and does not lose heart at all. Therefore, we will try to live cheerfully and recklessly. ”

Dima against all kinds of tracheosta and tubes in the nose, and he and Tanya agreed that he would not lie alone in the intensive care unit, and she would “let him go”.

Here I am writing this and roar. Also, because Dima has no body at all, and his face is incredible, amazing beauty. And beauty and pain are an explosive mixture. I am attaching a photo.

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