The last steps

How could the life of a boy Nikita turn out

Help the back of Bifida help

Nikita is nineteen. He lives in an orphanage for children with disabilities. Six months later, he will not be able to walk a maximum of a year. He will be transferred to a neuropsychiatric boarding school, despite the fact that he is not sick mentally. He has Spina Bifida, a hernia of the spinal cord. And his life could have developed in a completely different way.

Orphanages for children with disabilities are more secret than nuclear objects. They let me go there to look for children with Spina Bifida only on the condition that I won’t give anyone named, I won’t take a picture of anyone and will not even mention the city where the orphanage is located. I comply with these conditions, otherwise they will cease to let me in.

The orphanage where Nikita lives is located in a small town in Central Russia. The town is more like a village, and the orphanage is more like a military unit. A very equipped area with a playground, an exemplary bath-lane complex, a neatly repaired and sterile-clean residential building. 160 children with severe violations live in the corps. In the dining room they are deliciously fed, although many children do not know how to eat. In wards, where children live in five or six - cleanliness, there are not even unpleasant odors. The staff tries - they wash, dress, feed. Good nannies.

But they do not know anything about the hernia of the spinal cord.

When Nikita entered the orphanage fifteen years ago, he was four years old, and he did not know how to walk and speak. This did not surprise anyone, here many children do not know how. Now no one will remember where it was brought from, and in the medical record it is written inaudibly. But the manager says that he was weak, as if starving, and on his back he had a huge scar from surgery.

Orphanages for children with disabilities are more secret than nuclear objects

The nannies felt sorry for him, tried to feed more, and soon Nikita fought and put up. Once he got to his feet and went. First, a few steps around the ward, and then in the corridor, on the stairs, to the game room, to the dining room. Clip, of course. The legs in the ankle joints turned a little inside. But he went, and everyone was very happy.

And one nanny did not just wash and fed Nikita, but for some reason fell in love. She spoke all the time with a wordless boy and all the time, free from washing the floors, read books to Nikita. A few months later, Nikita, in whom it says that he does not speak, spoke. Children with Spina Bifida usually have no problems with speech. It just never occurred to anyone before this nanny to speak with the boy.

Illustration: Olga Khaletskaya for TD

Children with Spina Bifida are usually intellectually preserved, but no one knew about this in an orphanage in the middle of a small town, more like a village. There were no school classes in the orphanage. Last year alone, the regional government ordered the teaching of children who have “mental retardation” in medical records. Only this nanny, who for some reason fell in love with Nikita, decided that since she taught the boy to speak, maybe she would teach and read. And she began to teach. Nikita learned to read very quickly. The nanny began to teach the boy and write too, but somehow her life changed. She moved somewhere from a small town, and besides her, there was no one to teach Nikita.

Nikita is nineteen. He knows how to read, but does not know how to write. True, he has nothing to read. In an orphanage for children with violations, it somehow never occurred to anyone to arrange a library. Volunteers from the regional center come to a small town quite often, but they bring toys. It does not occur to them to give children with the mental backwardness of the book. True, they gave a computer. Nikita began to go to a computer class, but there is an Internet in an orphanage only in accounting, everything that could be read on a computer without the Internet quickly ended.

several months, and Nikita will sit in a wheelchair read the same Two worlds of what is different from Russia and Switzerland

And soon the ability to walk and Nikitin will end. Children with Spina Bifida have weak joints. A small clubfoot that the educators noticed when the boy had just begun to walk fourteen years ago, progressed from year to year. Day after day, with each step by his own weight, Nikita unleashed the ankle joints to himself more and more, so now Nikitin's legs are turned almost in his feet up. A few more months, and turn out completely. Nikita will sit in a wheelchair.

In order not to have dislocations, children with Spina Bifida need special orthoses, special shoes. But in an orphanage in the middle of a small town there is no one who would understand about the orthopedic regime. Nikita will move to a wheelchair, move to a neuropsychiatric boarding school for adults and will soon die from renal failure. Children with Spina Bifida often die from kidney infection: they usually work poorly with the bladder. So that there are no kidney infections, stagnant urine must be removed using a urethral catheter. But no one in a small town knows how to catheterize. Here they did not even hear about catheterization.

Once a governor came to the orphanage. He is probably a good person. He meticarly examined the entire territory and the entire residential building. He praised for cleanliness and for delicious food in the dining room. Entering Nikita to the ward, he greeted Nikita's hand. But I did not understand anything about the fact that the young man at the age of nineteen does not know how to write, nor about dislocated legs, nor about the affected buds. I probably thought that it should be so. This is an orphanage for children with disabilities.

But it shouldn't be so. At the twentieth week of pregnancy, an ultrasound doctor must determine that the unborn child has Spina Bifida. He must invite a woman to operate the child in intranotically or immediately after birth. We have created the Spina Bifida charity program in order to operate on children like Nikita. And if you do not cure them at all, then at least significantly facilitate the consequences of the spinal hernia.

Someone-a psychologist-had to talk with Nikitina's mother and promise her help. Perhaps then she would not give up the boy.

Illustration: Olga Khaletskaya for TD

And immediately after Nikitin's birth, the physical therapist had to come to him regularly and deal with him. To teach mom catheterization and the rules of the orthopedic regime. And if the boy would nevertheless end up in an orphanage, then the staff of the orphanage are taught catheterization and the orthopedic regime. We created the Spina Bifida program so that children like Nikita have orthopedic shoes, and there are no renal infections.

Nikita was supposed to study at school. Not time from time to time with an orphanage nanny, but as an ordinary child. We created this charity program so that children with Spina Bifida study at school.

After meeting with Nikita, I went to the head of the Department of Health to the regional city. He seems to be a good person, in any case, he promised to send an orthopedic and urologist to Nikita, try to save the joints and kidneys, if not too late. This is a big city. It has a decent orthopedic and urologist. There are even modern rehabilitologists, physical therapists and ergotherapists in it, we specially taught them so that they could work with children like Nikita. It remains only to find the lost and not receiving children's help and find money so that the specialists work calmly.

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We sat with the head of the Health Department in his office, and the head of the department promised me to do Nikita, if not too late. I was silent and thought it was too late. I was late for help Nikita. But the Spina Bifida program can help other children like Nikita.

You just need to find children and money. I will find children. Money in order to organize operations not yet born to children and in order to abbilit those already born, is needed constantly. We ask you to make regular monthly donations. Even a small amount will help for children like Nikita to avoid Nikitina fate.