"He chose us"

Who will help parents of a fragile newborn

We help fragile people help

High, stately Irina opens the door. Five -year -old Lesha and seven -year -old Timosha greeted decorously, but after five minutes they are already curling in the kitchen, the news flows to Niagara:

- We had lessons by profession! We painted swan and decorated with our hands - Timosha brings me his notebook, he is preparing for school. In the notebook, the letters are painted with even sticks.

- What are your beautiful, even letters!

Timosha struck his head stiffly:

- Thank you.

I hide a smile, unexpectedly to see a seven -year -old child's ability to adequately accept a compliment. This is both funny and touching, and I want to laugh, but it is impossible - he is proud of his work.

The main character is sleeping on the dad’s stomach, the photographer was late for the train and will come a little later, and this is very successful, we drink coffee in the cramped kitchen of a tiny apartment in an infinitely long nine -story building on the very outskirts of Moscow.

- Irina, I know almost nothing about this disease.

- Few people know about her. Valera Panyushkin writes about her, and there is information on Lena’s website. In general, there is no information anywhere, and this is the biggest problem - Irina sits on the corner of the table, delicately gesticulating. - I also did not know anything and would not know if we had not encountered it.

Broken in the stomach

Irina has radiant eyes, she is all radiant. Timosha and Lesha periodically dive into the kitchen to lean against her mother, she attracts them to her, and everyone freezes for a second - they are warm and cozy together. Fifteen -year -old Ani is not at home, probably she also poured to Irina when she was small. Irina cannot hug Zakharka - Zakharka is crystal, it will break. I try not to think what a woman feels who is powerless to hug her child because she is afraid to break him.

Mom Irina feeds Zakhara Photo: Andrey Lyubimov for TD

“He was born at night, at two thirty, and at nine in the morning a doctor who took birth and a pediatrician approached. You say, remember how you gave birth? I realized that something was wrong, and they said that the child had a leg, a soft back wall of the skull and, most likely, this diagnosis is an imperfect osteogenesis. ”

I try not to think what a woman feels in powerless to hug her child because she is afraid to break him

Irina talks about this, smiling with warm eyes:

“The doctor was very kind, but they said that the child could die in the first year of life. They did not immediately notice the problem. Zakharke was set nine points when he was born, this is a completely healthy child, and by the morning the leg began to swell - a fracture with a displacement. Further “ambulance”, Filatov, hood. I immediately have a reaction of protest - it cannot be, they broke his leg in childbirth, and in Filatovskaya they said that he had a second fracture - before giving birth, his left leg and left handle broke, and already - before the birth - fused. ”

Mom's stomach is the safest place in the world. In it, a tiny unborn Zakharka broke down and probably cried with pain. With mom and without mom. They say that unborn babies know how to cry.

“Then I found out that there is not enough calcium, because it is not absorbed - a changed collagen. There are several types of this disease, there are differences between them. To find out what exactly at Zakharki, you need to put genetic tests in stages until they find which gene is broken. I began to look for information and came across the Lena website. And the doctors said that she had the most information. ”

Lena is Elena Meshcheryakova - the head of the Fragile People fund. Lena also has a fragile child.

Plus fourteen

- In Filatovskaya, he was without us, a meeting once a day. Bleeding was opened in the hospital, and he stopped sucking, fed through the probe.

- Irina, have you been allowed to the child?

Irina looks away.

- I myself against the backdrop of all this began to bleed, I lost three and a half liters of blood. The operating table, resuscitation, poured blood. I went out and went to go to bed. Doctors did not tell me a lot of things - I'm only out of resuscitation.

Three and a half liters of blood. So, when the tall, fair -skinned Irina was taken to the operating table, only one and a half remained in it. This means that there are fourteen people who came to the donor point in it, so that three funny boys and a fifteen -year -old girl have a mother. Who are they, these people? And why did it become important for them to give their blood to a stranger?

The lives of fourteen people flow in it, who came to the donor point so that three funny boys and girls have a mother

“Zakhar lost a lot, weighed less than when I gave birth to him. They brought it to me on a gurney. You can’t take it, you can’t touch it. I learned to touch him for five days. It is impossible for the handles, it is impossible for the legs, only under the ass, if the diaper is changed, and this is a completely different procedure. The doctors are good, but they also did not know anything at all and did not say anything, I found out everything on the site from Lena. The mixture does not suit him, he bursts everything, but it is impossible to hold it with a column. The manager came, looked at how it was eating, and said to change the mixture, not to wear, not to put on the side, not to pick up. ”

Mom Irina holds her son Zakhara in her arms photo: Andrey Lyubimov for TD

Do not pick up his child, who needs a warm mother nearby, and he heard her acquaintance with a “road”. But it was impossible to pick up. Timosha comes to the kitchen again - snuggle up to his mother. Irina attracts him to her and continues, stroking her son's hair:

“The manager was optimistic, said that the children were restored. There is also cataracts, and the children do not see, but we do not have it. It is not clear whether he hears or not, most likely he hears - wakes up to sounds, but maybe he does not hear so well. But that's okay, let's see later, ”and she cheerfully brushes off with his hand from possible deafness, as from something insignificant.

He is spinning

“I am a psychologist. We have a UNESCO department. He is trying to help the head of the head, thanks to him, I received information from geneticists. I did not know who to contact, and no one knew. The first gene is thirty days of waiting, if not it - the next and another thirty days. I was asked to make a spine x -ray. If I am to blame, I should have vertebrae in the form of fish bones, - Irina draws a finger on the table with a finger on the table, - but I did not have that. They may not find which gene is damaged. I think everything, maybe people are also sick, but do not know this, there is no information. In the hospital, Zakharki broke the ribs and radiation bone, broke his hand on January sixth - he waved his hand, they, small, waved his hands, touched dad and broke. No one told us where to go when a fracture. You won’t go to a regular emergency room, they don’t know what to do with such children. And the gypsum should be different, light, from the heavy he can break again. It is useless to the emergency room. And what to do? Then I found a round -the -clock point in a clearing, they made an X -ray there, they just put a pen and tied a pen. But he is spinning, the bandage slides, ”Irina smiles softly, recalling how Zakhar was spinning.

“Someone would say what to do with it in everyday life, that's what is difficult. I lifted it with the mattress, and he moves away, but how is it back? I put the diapers and, when he crawled, pulled up with a diaper. Here we played this escalator. And he still moves off the mattress, and the mattress is soft. And then the husband made plywood thirty for seventy, we pulled it with a cloth and put it in the fabric, and a diaper on top. The husband said that we would lift the column, we lifted it with plywood. And a week later we found ancient swinging, and after five days I decided to put a shirt on him - she laughs quietly again. -And now we have a suit that all, all in front is unfastened. The main handle in the sleeves, you fasten - and that’s it. He now sleeps like birds-on his back and wing his arms to the sides, and waves his hands like birds. ”

Everything is different

“The head gave the coordinates of Lena and NCZZ,” continues Irina. - Through acquaintances, they found a pediatrician who knows such children, he arrived, said that we are not the worst option, said that we were doing everything right, the first treatment is calcium and vitamin D, you can slowly lay on its side. He said that they would not worry, you need to constantly engage in, restore and develop. And he loves luminous lamps. He, when he was lying in the hospital, there are lamps. He allocates them everywhere and looks at them, and still loves white - the hospital. He smiles. He was so smiling at a neurologist! She said that everything is in order with him, and everything is in order with intelligence too. And the head in our clinic, so that we would not wear him in the offices, collected all the doctors in our office by our arrival, and we immediately went through all the doctors in her office. She said that they have the second such child. The first is a girl. Refusal. "

Irina brings her lips a little and sighs.

Irina is waiting for the beginning of the examination in the NCZ, after the examination they can tell them what to treat Zakharka. But, even if they say, the treatment of imperfect osteogenesis is not included in the compulsory medical insurance system, this means that it will only be paid.

Mom checks what her children do in the kitchen photo: Andrey Lyubimov for TD

- Irina, if there was an opportunity to get any help, what would you ask?

-I don’t even know, so far we decide everything ourselves, and both friends and doctors are trying to help us.

She begins to talk about Zakharka again. He has very unusual eyes, he has gray squirrels. I do not understand how it is gray proteins. Irina again waved his hand, as soon as Zakharka wakes up, I will see what unusual eyes he has. And it is relying:

- I remembered what help needed! It is imperative that all the information about this is going to somewhere. In one place. This is important. After all, people do not know where to look, but in the regions they do not even know the diagnosis. Now only Lena, she does a lot to so that mothers know how to treat such children, which clinic to go. And about genetics, and about swinging, and how to change the diaper. This is very important. Simple, household issues, but everything is different, and you do not know how. And we would have a good orthopedist and a masseur to find. Maybe someone knows the masseur who has already encountered this? An ordinary children's one cannot. When Zakharka lay on the hood after the hospital, his heel left. Doctors say that a special boot is needed, and the pediatrician said that you can damage, a specialist who can say what to do. We really need an orthopedist and masseur.

Maybe someone knows the masseur? Irina really needs it.

- In two months we have only adapted to him for a week. The husband takes him in his arms. You need to take under the ass and under the head. And I'm afraid - his head is soft behind, and I'm scared. And his joints are special, crunch, very scary. And he already turns his head and smiles. He smiles so well!

- Irina, you are a psychologist, you are doing the situation. Not everyone can. There is another mother, she is very difficult, she is alone. Advise something.

The main thing is that you do not scold yourself for what happened. It is important to remember that your guilt is not

- How to help others? Vera gives me a lot. The child came to your life. They themselves find their parents. He chose us, and we must help him realize what he came for, not at the level of mysticism, but at the level of acceptance. What does not depend on you need to be accepted. At first there was a denial of the disease - no, this is an accident, it is not a disease. In my intensive care, I had the moment when I could die myself, I realized that I was leaving, and began to say goodbye and send SMS. And then she said to herself: “Stop! I have children, they need me. " And she refused to die. But then you go down again and go into the problem. And you know, when I am leaving for it, I start to cringe the seam, and I return. I read Louise Hay, it helps me. You have to solve the problem. The one that is now. The main thing is that you do not scold yourself for what happened. It is important to remember that your fault is not. If this child has chosen you, then you have a resource to support the child in life. We have no tragedy. We have a problem that needs to be solved.

Zakharka wakes up and begins to whimper, he overslept on dad for more than an hour. Zakharka has a bass voice, he does not cry, but grumbles either with a very large cat, or a very small tiger. We move to the room and get acquainted with Zakharka and Dad. Zakharka is charmingly shaggy with an amazing cut of the eyes. Squirrels are really pearl-gray. A small, fragile alien is already lying in the crib and, dazzling appetizing, bursts from the bottle. He chose good and strong parents. Irina stroke Zakharka on the head. Around the crib is circling the photographer, choosing angles. Father smiles standing in the corridor. The older brothers are nearby.

The father holds his son in the arms and looks out the photo window: Andrey Lyubimov for TD

When we say goodbye, Andrei takes his son in his arms - hold a column after eating. Zakharka with a small motor worships something in his ear and taps him with a fist on his side. I freeze with horror - it will break, and I understand that they are surprisingly similar.

- Andrey, he is your copy!

Andrey and Irina laugh.

“They were all born the same,” Irina quickly pulls out an album with photographs from somewhere. - Here, look, we distinguish them in photographs from the hospital only by our clothes!

They argue gambling who it is, Lesha or Timosha:

- Yes, look, this is a hood with a fur! So it was winter! So Timosha!

Read also For God, everyone’s healthy bones are so healthy that he was born with seven fractures. Pope Kiryusha - a young priest - considers the disease the mercy of God and hopes for recovery in eternal life.

The babies are really indistinguishable, but Zakharka is a little different-he has pearl-gray squirrels and a very dark iris. Holy family. They were chosen by a crystal child to realize what he came for.

The Help Foundation collects funds to pay for the work of employees of the Fragile People's Far Foundation. Now there are three volunteers in the fund, but for full work this is not enough. The Fund is a huge work: creates a medical community for imperfect osteogenesis, organizes and pays for medical care for children and adults, acquires rehabilitation means, conducts psychological assistance groups to parents, organizes camps for adolescents with imperfect osteogenesis, engages in sociocultural rehabilitation, helping in issues, consults on issues related to the disease.

Help work to the fund! Irina asked you very much about it.