The husband of “crystal Nastya” received a summons: “The disease is serious, I almost don’t go”

“I only have my earlobes intact,” she joked.

Now Nastya is 41 years old, she is a disabled person of the first group indefinitely, practically bedridden and in a wheelchair.

And her husband, the only breadwinner in the family, received a summons for mobilization.

…Climbing the stairs to the first floor, I hear crutches at her front door knocking. Then the door opens, and behind it is Nastya. She came out to meet me with all her might.

Crystal Nastya Marukova.

As if those eighteen years never happened.

“I hardly get up. To the toilet and back, otherwise I usually wait for Sasha from work on the bed. Not a day without anesthesia, ”today’s adult Nastya frowns, and in my eyes that heroic inch from 2004.

Once believed that everything is possible in our world. And even a miracle.

March-2004

Outside the window – spring on the demolitions. With a bag of oranges, I rush through the puddles to meet the most incredible girl in the distant polar city of Inta. For 22 years, Nastya Marukova suffered 45 fractures.

Spontaneous mutation of genes. Imperfect osteogenesis. Awkwardly turn around – and the arm in a cast, or leg, or back. There are only a few dozen such people in Russia. They are called crystal. Nastya is one of them.

As a child, she broke down even in her sleep.

One day, a girl who was only three years old was touched by another child. The result is a severe fracture of the spine. Since then, Nastya has remained 128 centimeters, and not an inch more: she has stopped growing.

When we met, she was living in a hospital room at a famous obstetric center on the outskirts of Moscow. Small, almost toy, impossibly fragile. Like a china doll, a fiery, black-haired Spaniard; it seems, stab a scarlet rose for her curls, put a fan in your hands, and she, like a flamenco dancer, will rush at a gallop.

Pregnant Nastya could not get up, walk. Only to lie, periodically carefully moving into a wheelchair and back – and so endless months to give birth to a child. Every movement caused unbearable pain.

“I wake up in the morning and understand that my legs are failing, as if they were strangers, they are lying next to me on the bed,” she did not complain, no, she simply said that, they say, this also happens in life.

Doctors warned that it was impossible—just not possible—to report a pregnancy with such a diagnosis. It seems that there was one such unique woman in Russia: she gave birth and almost immediately died.

When the gynecologists in Inta found out that Nastya was expecting a baby, they sent her for an interruption: “And you can’t stand him, and ruin yourself.” “At first I wanted to obey, because they scared me very much, and then I feel that he is there, alive and healthy, and I couldn’t,” she said.

Khrustalnaya Nastya was told that she would have to make it to at least 28 weeks. And you can already “caesarean”. The child will have a chance and the mother. Otherwise, the pelvic bones will not withstand the load and crumble into dust.

And she counted the weeks and days, begging the child to hold on inside her for as long as possible.

Did Nastya understand that she was risking herself, giving life to her only son? In my opinion, only women truly understand this, which is why for us human life, given at any cost, is absolutely priceless.

Nastya rang all the bells, wrote to journalists, to famous talk shows, realizing that only Moscow could help her. There was nowhere to live in the capital, there was nothing to be treated for – and yet she got through.

“I won’t survive if something happens to you, I really need you!” – husband Sasha Marukov shouted so loudly from his Arctic into the telephone receiver that all the wards in the maternity hospital could hear.

Nastya told me how they met. She was 15. He was too. She was sitting on the windowsill with her leg in another cast. The tape recorder played Tsoi. Then everyone listened to him: “White snow, gray ice on cracked earth…”

And Sasha Marukov walked past. 182 centimeters tall.

Sasha saw Nastya, lost his head and climbed into her window. Then he went into the army. And she was waiting for him.

Then they got married.

Maybe out of love, or maybe just the time has come – but then Nastya even stopped breaking down. This coincided with the time when she was waiting for Maxim.

First there were two, then three.

Maxim was born on April 8, 2004, at the 34th week of pregnancy.

The heroic crystal Nastya with her men did not leave empty-handed for her native Inta. Articles about her in MK shocked the concerned Muscovites so much that dozens of readers brought to the hospital a “dowry” for the baby, money, a stroller, a crib, a lot of toys …

At parting, we promised not to forget each other, call and write, and a year later I really wrote a sequel, that everything ended well. For publication, Nastya sent me a photo of a funny toddler with a bow tie. They were almost the same height – a crystal mother and son.

October-2022

Outside the window is dank, slushy, sickening. Two-month-old kitten Monya, who was recently adopted from a shelter, lies down by my side and starts purring. This is Nastya the cat. Nastya’s kitchen.

But outside the window – not Inta, but Korolev near Moscow. The Marukovs have been living here for the fifth year. Mortgage apartment. Max is in college. Sasha at work. In their entire small family, one husband works. For everyone.

The limit on miracles has been exhausted. I found Nastya because the editor received a letter:

“Hello!

I am a disabled person of the 1st group, indefinitely. My husband received a notice. According to the presidential decree, men caring for a disabled person of the 1st group are not subject to partial mobilization, provided that there are no other persons who are obliged to support these disabled people. But we have a son, and he is 18 years old. His name is Maxim. He is a full-time student.

My illness is very severe, I hardly walk. I need heavy physical care constantly. Assistance in seating on the stroller, on the toilet, in the bath. Because any sudden movement leads to fractures … My son cannot help me with this.

With my disease, we have been married for 19 years. There is a certificate from the MSEC for an indefinite period that I am disabled, I need constant care, a marriage certificate, an extract from medical clinics about the severity of the disease, the number of fractures, a genetic analysis confirming the diagnosis. 18 years ago there was a series of articles about me in your newspaper.

Sincerely, Anastasia Marukova.

At the beginning of October, someone shoved a summons from the military registration and enlistment office through the crack in their door. Nastya did not receive anything and did not sign. And the agenda itself was also not signed by anyone. Nastya did not even hear that someone came to them.

“Me with two hearing aids. This is one of the consequences of my illness, if I take them out, I don’t hear anything, ”she sighs. Sasha returned from work – I had to show him. They have no secrets from each other.

After giving birth, Nastya got up on crutches. And she hasn’t left them. Not only bones, but also ligaments began to crumble. They became dry as hemp.

“I worry about my son,” says Nastya. – We didn’t do a genetic analysis for him, but he already had three fractures. Although he grows up, his father has already outgrown, only very thin. I was always nervous and afraid to even think about giving him this analysis. And now many who have disabled boys have sighed: the mobilization will not affect them.”

I also had to move to the Moscow region because of Maxim. The polar climate did not suit him: long winter, short summer.

“He was born at eight months old, the lungs didn’t open right away,” recalls Nastya. – Maxim’s condition remained difficult for a long time, inflammation began … My son was breathing through an intensive care unit, they fed him through a tube with expressed donor milk. And then, at home, he constantly had health problems, we had no choice but to leave.

– You yourself seem to have stopped breaking even before the birth?

Yes, I stopped before giving birth. And then she started again. And now, you yourself understand, such an age has come up, the bones of women become brittle over the years.

She shows pictures of their family. For all the past 18 years. At the last, Sasha’s husband is no longer thin and lanky, as I remember him. We are changing, the world is changing…

“Over the years, my husband has become everything to me. He learned how to do massage, how to tap, so that there are no stretch marks, he puts on splints, does electrophoresis, dursenval. Every day for 3-4 hours it takes only this. To the toilet, to the bath, to the street, to the clinic – I am with him everywhere, and without him there is nothing, ”Nastya smiles sadly.

It is Alexander who is rehabilitating his wife after numerous fractures. They do not even fix light cracks in the emergency room – they manage themselves. There have been several very severe fractures in recent years.

Nastya does not work. She is a philosopher by profession, and with a red diploma, but what kind of profession is this nowadays …

Next to her bed is a medicine stool. There is also a glass of water for you to reach. A light snack, so as not to get up on crutches once again. Crutches are always there – tiny, childish, for a five-year-old baby. But even walking alone to the toilet is dangerous: the crutches can part, the leg can turn up. We have to wait for Sasha from work.

In the morning, Alexander rushes to the office, then – home; Now, as a result of the pandemic, a lot of things have become possible to do remotely. “And it’s a real salvation that he can break out in the middle of the day to check on me.”

After receiving a summons from the military registration and enlistment office, Nastya immediately wrote to everyone, everyone, everyone. To the President, the Prosecutor General, to the Military Prosecutor’s Office, Commissioner for Human Rights Tatyana Moskalkova…

Like once, eighteen years ago, in the hope that someone will definitely help. But so far there is no official answer. Although she had already prepared what she would say to them:

“My son will not be able to wash, wear, bandage me, carry out daily physiotherapy. A social worker is just going to the store. We are dependent on my husband, my medicines are very expensive, we buy almost everything on our own, import substitution does not work here: there are serious side effects from domestic drugs. My husband also injects injections, this must be done every day – I myself am not able to get to the clinic. And I can’t even go down into the yard without a wheelchair.”

– Nastya, well, how can he be mobilized, there is a decree, if a person is caring for a severely disabled person, then he is not subject to mobilization … I suddenly remember.

— Yes, but there is one exception in the decree. My husband is not the only adult member of the family. There is also a son, and he is 18. So what, that he is a full-time student, that he studies in Moscow, that he does not work and is dependent on himself, that he cannot do everything that Sasha does, nobody cares. Yes, lawyers say that Sasha can quit and formalize only to take care of me. For this the state will pay him one thousand two hundred rubles a month. And he will not be subject to mobilization. But then we will have nothing to live on. There is nothing to pay a mortgage – 40 thousand a month. Because I have a pension of a little more than fifteen thousand rubles …

I interrupt her. I run into memories. Where we are both young and free, both of us are so frivolous that we believe in any miracles. And that’s probably why they came true easily.

Not that I continue to believe in them. But I believe in people as a miracle. Although now it’s probably the same thing.

“Listen, do you remember how we baptized Maxim? In some tiny church in the center of Moscow, you definitely wanted to baptize him here, before leaving for Inta, ”I tell her.

“Yes, and the godfather was a woman who helped with my move to give birth in Moscow, and the godfather was an ordinary MK reader who called after the article was published.”

“It was a good time,” I tell her.

“Good,” Nastya agrees.

She shows me the latest photos of how they spent the summer together at the seaside. Sasha still carries it in her arms. She is everything to him.

As he is for her. And they are together – for Maxim.

I promise to write an article – and maybe, as once, someone will read and help crystal Nastya. Moreover, she actually has a legitimate reason for the postponement: not only those who care for seriously ill relatives are not subject to mobilization, but also those who are their only breadwinners, that is, on whose dependents they are.

Like Sasha’s.