Snowball

Senya grew up healthy and unusually smart. But for 15 years now he has not moved, he doesn’t talk and does not see - he lies almost silently or beats in convulsions while mom takes care of him

Help a house with a lighthouse help

Confession

Stuffy. The summer sun hits the window, heats the table with medicines. Ira stands in the middle of the room in a pink baggy T -shirt and ties hair in a small bundle. Senya, her son, lies on the bed by the wall and looks somewhere at the ceiling. His head lies on a pyramid of pillows, arms and legs restlessly rest on a snow -white sheet.

"Ready?" Ira asks, moving the electric lift. Arseny does not answer. The room is immersed in silence.

For 15 years he has not been able to speak. For 15 years he cannot see, stand, turn his head or raise his hands. The canopy has a rare genetic disease: X-scented adrenolecodistrophy in children's cerebral form. Frequency of cases: one by twenty thousand. For 15 years now he has been lying almost soundlessly or beating in cramps while his mother takes care of him.

Senya photo: Evgenia Zhulanova for TD

Ira approaches her son and pulls out several pillows from under his head. Senya makes a moan. “Now we will lay a gamarm,” she says, and puts gray-red fabric under his body. When she turns him to one side, Senina's leg trembles with convulsions. Ira reassures him, asks to tolerate a little. Convulsions stop.

This was not always the case. Senya grew up with an ordinary healthy boy. According to Ira, unusually smart: at four, he himself learned to read. I just watched how the older sister does it, and repeated the letters. At seven, the boy went to school and studied well, but hit his head on New Year's Eve. Since then, everything has changed.

There is a buzz of an electric motor. Ira fixes the hammock on special hooks, carefully corrects the Senino body, pulls striped leggings on his thin legs. "Preparation?" She asks. It silently moves the lower jaw. Ira unfolds the lift and passes through the narrow corridor, carefully making sure that her son’s legs and arms do not hit the wall.

Senya and Irina Photo: Evgenia Zhulanova for TD

After the injury, Senya began to tire quickly, and the school teacher advised to go to the doctor. According to Irina, the boy was sent to an MRI in the boy’s hospital and said that his brain was destroyed. Senya then could still run, jump, see, say, looked like an ordinary child ... But there was already irreversible changes inside.

The second lift slowly lowers Ira from one floor to another. Senya rests in her arms. Ira presses him to his chest. On the ground floor, she rises and with a smooth movement shifts her son to the stroller, fixes the body and puts his head. Mom pronounces her every action, soothing the boy who does not move and does not see, but, it seems, he hears and feels everything.

Senya photo: Evgenia Zhulanova for TD

Senya lost all skills in nine months. At first he began to stumble and lose his balance. Vision was narrowed until he stopped seeing. Gradually disappeared and speech. It became more and more slurred: the tongue was taken away, the larynx stopped working. The disease turned the Senins words into mooing, and then deprived of this. The life of the canopy froze. The disease enclosed it in an impenetrable body case.

Sad stories

Senya lies on a high inflatable mattress under the shadow of a beach umbrella and a young apple tree. It smells of freshly chopped grass, insects buzz. In the summer, Ira inflates this mattress every morning, covers it with a sheet, pillows and blankets. And then carefully overcomes with the canopy all the way from the second floor to the apple tree. An hour to decompose everything and go out, an hour to return home. It used to be longer - Senya had to wear it manually. But in the last two years, a ramp and lifts appeared, and Ira was able to exhale a little.

She sits next to her son on a bench. I notice small scratches on her fingers, and on a crumpled T -shirt, stains. Ira looks at me with her gray-blue eyes and smiles broadly, but I feel her fatigue at a distance.

Senya and Irina Photo: Evgenia Zhulanova for TD

X-scented adrenolecodistrophy has been little studied today, and 15 years ago in Russia almost nothing was known about it. When this diagnosis was made to Seine, Ira could not help. Doctors gave the boy two years of life and offered experimental treatment. Ira had to raise two hundred thousand dollars and go with her son to Israel for a bone marrow transplant. According to her, then there was not a single successful operation.

Thinking, Ira decided that it was better to stay at home and give Seine all possible care and love. But the new life was much harder than it could imagine. Together with the illness of her son, Ira lost her job, and her husband left the family. Everything collapsed overnight.

Senins of suffering continued. The disease not only deprived him of the opportunity to move and talk, but also caused spastics: the boy began to fight in convulsions, so terrible and painful that when talking about them, Ira's voice changes.

“He is bending, his arms, legs, and back work. He sweats, blushes, suffers, loses weight. As if they had put a person on the simulator, but he cannot get away from him. He is tired, but cannot stop. And this happens constantly, around the clock, ”she tries to describe.

Senya and Polina photo: Evgenia Zhulanova for TD

Ira recalls that when she was faced with spastics, she called an ambulance. The doctor looked at the child and said that it was agony. Ira was offered to say goodbye to his son and took him to the hospital. On these words, she rises and strokes Senya. “I tell such sad stories,” Ira says to her son.

I only now notice that in my 22 he is still a child. The face of a little boy and a thin body. On the upper lip, a pair of hairs where the mustache should grow. “After seven, he almost stopped growing,” Ira tells me.

When Senya was given to his mother, he weighed about 16 kilograms. Remembering what the boy looked like, she says one word: "Auschwitz." Senyu, of course, was not cured. Spasting remained, but now Ira was already afraid to contact hospitals. She decided that she would better cope. So her new life began. Senina's life.

Senya photo: Evgenia Zhulanova for TD

The girl parks a bike next to the ramp and goes to us. Her hands are large bags with food. By the eyes and features of my face, I understand that this is the older sister of the canopy. Polina is only three and a half years older, but she had to grow up early. When my mother turned out to be a son chained to the bed, it was her daughter who helped her not to drown under the weight of a new life.

Polina went to school, and after the lessons she ran home to replace her mother on round -the -clock duty and sit with her brother. Feed it, wrap it in a blanket, turn it over, change diapers, wash, feed, give medicines or just hold it in your arms in the hope that spasts will end. Round day, seven days a week, year after year.

Ira still does not understand how Polina had enough strength to study and help. She barely withstanded, slept for three hours a day and almost completely disappeared from the outside world. In response, Polina only modestly smiles and fits his fingers.

Like a snowball

Small kitchen huddles in the room in the room: it is easier to take care of him. Ira includes an electric kettle, and I examine their two -room apartment on the second floor of a private house. In the rooms, ordinary life was mixed with the consequences of the disease. On the racks of books, photos and old Senins toys, a large oxygen concentrator below. In case Senya begins to suffocate.

Senya and Irina Photo: Evgenia Zhulanova for TD

Ira pours boiling water into a bowl of currant, she kneads the berries with a spoon and tastes the compote. Next to her Senin saliva -tutor and a bag of Ambu are a plastic container with a mask for artificial ventilation of the lungs. A couple of years ago, when the canopy began pneumonia, Ira had to pump him out for half an hour before the ambulance arrived. I ask if she was scared, - shakes her head.

Ira removes the berries back into the freezer and freezes in front of an open box for a second. I look inside, she pulls out a transparent bag with something white. “This snowball is 15 years old,” she says embarrassedly. When the Sene was seven, he decided to roll a snowball and freeze in order to melt in the juicy green grass in the summer. That summer, the disease did not allow the Seine to do this. Com is still waiting in the wings.

Polina sits in the place of Ira, carefully watching the canopy. Next to her, the sandbox, in which she played with her brother in childhood, and the Lyuzhayka with whom they broke the plants. As a child, they really loved Harry Potter. They cooked potions and invented spells. Senya dreamed of becoming a wizard. Every birthday, he painted a zipper on his forehead, put on plastic glasses and a small mantle. He dreamed of becoming Harry Potter, a boy who survived. And partly became them.

Irina photo: Evgenia Zhulanova for TD

Seine was given two years of life, but fifteen passed. He cannot move and speak, but he swallows and coughs, and this greatly facilitates the life of Ira and Polina. The boy does not need pipe for feeding, and he himself can clean the throat and lungs, which means that they do not need a device for half a million rubles.

Ira lays a bowl of compote, a towel and wet wipes near the canopy. She strokes his short hair with her hands. Senya looks in response. It seems that he focuses on her face, but the pupil continues to move and rushes somewhere to the blue sky.

Ira picks a bright red liquid into the syringe and injects the hay compote in the mouth. The boy drinks long painful sips. "Like?" She asks, wiping his mouth, and repeats the procedure.

Ira proudly says that now Senya weighs 30 kilograms and has recently stretched out a few centimeters. Recently, he even had to buy a new set of clothes. Senya coughs, cleaning his throat, Ira continues to speak.

Senya and Polina photo: Evgenia Zhulanova for TD

Five years ago, another fracture happened in their life. This time positive - the Foundation "House with a Lighthouse" appeared. They bought a lot of new equipment for the canopy and picked up the necessary medicines. The combination of antipsychotics stopped spastics, finished the nightmare that tormented the boy for many years. So for the whole family a new life began.

And the emptiness retreated

The sun bakes asphalt, children on an ATV pass by with a roar. Ira leads me through the labyrinths of local streets overgrown with herbs and work announcements. We go on a small road covered with gravel. When Senya was healthy, he often drove a bicycle here, and his friends lived in that red two -story house. Brother and sister are a couple of years older. Now they have already grown up, graduated from the university and moved. And Senya remained.

Polina photo: Evgenia Zhulanova for TD

Ira says that at first friends still came to her son. By inertia, out of politeness. Then they smoothly disappeared from his life. Senya was worried. He could not say or write about it, but she saw, felt the boy worried that he was left alone, that a vacuum formed around, which was filled only by two tired people.

“He was always sociable, and this love for people remained. He longs for communication, contact. When you approach him in the morning, he sighs, as if he says: “Well, they finally approached me,” says Ira.

When gravel with asphalt ends, a small forest begins. It smells of raw earth, the sun is lost in the crowns of trees. When a “house with a lighthouse” appeared in their life, everything changed. The emptiness around the canopy disappeared, assistants, doctors, nurses from the fund began to come to the family.

Senya photo: Evgenia Zhulanova for TD

At first, Ira was wary. For ten years, he and Polina were the only ones who had constant physical contact with the canopy - the rest were afraid. Even relatives were limited to financial support and communication at a distance. Strangers came here and were not afraid to come close. Moreover, they immediately found contact with the boy - and the canopy of friends again appeared.

Friends who are awake, feed, put it, give medicines and take a walk. Friends who have learned to understand the Senins of reaction. By tension of muscles, by breaths and exhalations, they determine what he needs. They let him listen to podcasts, put meditative music, cartoons and films about Harry Potter. They give the Seine the opportunity to feel the warmth of human presence and communication.

“He is better with them than with me. For me, this is a routine, and they come clearly to the hay, and he gets all the attention. Real friends came to him, they love and respect him, ”says Ira.

Senya and Polina photo: Evgenia Zhulanova for TD

She laughs, she is well. Ira became much easier, she had free time. Thanks to one or two days a week, she learned to rest. She began to walk, learn the new, began to spend time on herself. But most importantly, she had support. Ira calls this respect for the prevailing fate, but I do not immediately understand what she is talking about.

And then Ira talks about the program that the Fund organizes for parents and their inconspicuously ill children. A week of life in an exit camp, where everyone can feel like a part of a large family. Where parents exchange experience, communicate with psychologists or just sing under karaoke. Where not just doctors and specialists are engaged in their children, but friends. Where in the air the feeling of unification, and not pity and compassion, hovers.

“I help you because I want and because I respect you. Because you are a worthy member of the community. I only met such an attitude in the fund, ”says Ira.

Irina and Senya photo: Evgenia Zhulanova for TD

And then I understand: when people from the “House with a Lighthouse” appeared, the emptiness suddenly retreated not only from the canopy, but also from his whole family.

The “House with a Lighthouse” fund helps incurable people and their relatives. They buy expensive equipment and consumables, train, support, pay medical personnel. The fund does everything so that the emptiness around the incurably patients retreats. But the fund itself needs help. Please support the work of the "House with the Lighthouse." This is very simple, it is enough to arrange a one -time or monthly donation through a special form under the text. Thank you!

We talk about various funds that work and help in Moscow, but Moscow experience can be useful and used in other regions of the country.