"Rusal girl"

Nastya from Khabarovsk does not know how to walk and sings beautifully. Grandma teaches the girl to tell everyone who laughs at her, that she is a mermaid

We help medical assistance to children with Spina Bifida collected 1,645 099 r need 1 830 100 r help

"In trend"

On the first academic year, Eight -year -old Nastya gathered in vocals in the evening. I chose an outfit - a striped jacket and a skirt, painted her nails with a golden varnish. The very next day, the manicure was disguised. I had to erase.

- What is the bracelet? This? - Great -grandmother Raisa holds out a multi -colored bracelet.

Five minutes before the exit. The girl nods in the affirmative.

- Or maybe another? Blue? - asks Elena, grandmother Nastya.

- In trend! You don't understand the trend! - reports her granddaughter.

According to Nastya, the trend is a rainbow and black and white. Rainbow circles are also painted on the protective discs of her wheelchair.

The road to the leisure center near the house takes ten minutes, but you can’t call it simple. Due to potholes in the asphalt, Nastya is scared to go herself, the stroller pushes her uncle. He tolerates the girl through a concrete block that grew in the middle of the road.

The main concern for Nastya is on the shoulders of Elena photo: Maria Ionova-Garbin for TD

Nastya goes to sing for two years. At first, Elena tried to arrange her granddaughter in the vocal and theater circle, but they were afraid to take the girl in a wheelchair in a wheelchair. Then she agreed to accept her young vocal teacher. During singing, sitting the lungs are not open enough, so it is more difficult to keep notes, but Daria Olegovna saw the potential in the girl.

“At first there were three living notes, and now she already sings and plays the number herself. This is heaven and earth! Previously, she could not even go on stage. It seemed to be ready, but when she went out, she could forget the words. But it grew up. Independent artist! She has become very confident in herself, ”says Daria Olegovna.

While the children in the corridor are waiting for the beginning of the lesson, the girlfriend complains to Nastya, that some boy called her a “disabled girl”, and worries: “What would happen if you heard?” “She is a girl-mushroom,” Elena immediately comes into conversation.

The hesitant was nasty nodding: "Yes!"

"Biological"

Before our meeting, Elena warns me: she is Nastya’s grandmother, but the girl considers her her mother. Therefore, in the apartment we talk, closing in a separate room. When the conversation comes to “biological” - as Elena calls Nastya's mother - she lowers her voice.

Nastya was born with a spinal hernia. This means that in a certain place the girl’s spine was formed incorrectly - it split - and the spinal cord came out. According to Elena, her son and daughter -in -law decided to abandon the girl after her birth.

“For a very long time, the head of the maternity hospital persuaded to leave, he said all the facts. She turned to the wall and did not react. My son is very closed. For two or three days I did not communicate with anyone, at work I took off your way away. Cried very strongly. I took a job at work, sobbed for two days, ”says Elena.

She could not come to terms with the decision of her parents to abandon the girl. It became even more painful because her dear son, whom she raised, was ready to go to it. Elena persuaded him to come to look at his daughter in the hospital.

“The manager said he fell to the floor, to his knees. For some reason, she opened a diaper, he gave her two fingers, she squeezed them like that-well, that's all, ”recalling the events of those days, Elena is still crying.

When unfamiliar children on the street approach Elena and Nastya and ask why such a big girl in a stroller, Elena replies that Nastya is a mermaid and therefore cannot walk. Nastya like this answer likes the photo: Maria Ionova-Gribin for TD

The son decided to stay with his daughter. Now he is not at home - he went to Sakhalin to work on the shift as a driver. Elena recalls that for several years the mother of Nastya came to look at her daughter from afar, when they played in the yard with her grandmother, but then disappeared. Now she has a new family.

When little Nastya began to confuse, not understanding, to say to Elena “BA” or “MA”, they decided in the family, let her mother turn to her. It happens that strangers look in surprise at Elena, her son and Nastya together when the girl calls them “mom and dad”. “Pugacheva and Galkin,” Elena laughs.

The woman realizes that Nastya grows up and understands more and more soon and will need to open the cards, but how, she does not yet know.

"Endless Mozart"

On the 21st day of life, Nastya performed an operation to remove a hernia, and a month later they installed a shunt in the head to eliminate hydrocephalia. All this time Elena was lying in the perinatal center with her granddaughter. The forecasts of the doctors were disappointing: the girl cannot even sit. Whether the intelligence of Nastya was preserved, the woman did not understand.

But the grandmother resolutely got down to business. In two and a half months, the girl was first brought home - and the apartment was filled with the sounds of the "endless Mozart", because Elena said that classical music has a beneficial effect on children's development. Then the same “endless” massage sessions began, later - a series of injections, which were supposed to stimulate the sensitivity of the back. In the first year of her life, the girls Elena lost 20 kilograms. After Nastya was discharged from the hospital, she again went to work as a teacher of the Russian language and literature, and her mother moved to care for the great -grandson to Khabarovsk.

Nastya stands in orthosis. She really likes to stand. Orthes appeared after the operation on the feet, Nastya stands in them for three hours a day-at that time she reads, draws, makes dresses to dolls photo: Maria Ionova-Gribine for TD

The efforts were not in vain. At four months, the girl raised her head, at seven learned to turn on her side, then on her stomach. In a year and four months, despite the forecast of a neurosurgeon, the girl herself sat down. On that day, she and her grandmother once again lay in the hospital. Elena seized time to run to the store for food while the girl was sleeping. And when she returned - she was already asleep, sitting, leaning against the side of the crib.

Doctors say that with a nastin level of damage to the spine, her successes in rehabilitation are impressive. Today she knows how to crawl perfectly, get off the bed. Relatives love when an eight -year -old girl makes them a massage - they say, her hands are so strong that it seems that an adult man kneads the back.

"From the stroller almost fell with happiness"

Last year, on her first day at school, Nastya drove to all students and teachers during the line and gave the first call.

“I really dreamed about it. I was happy. Just happily-a-a-a-Astliva. The kapets is how happy. From the stroller almost fell with happiness, ”the girl frankly.

True, the class in the class did not set. Nastya was at school on September 1 and 2, and then studied at home. A surge of pneumonia began in the city, then an epidemic of coronavirus. While the situation with the disease has not stabilized, Elena does not let the girl into class.

Nastya compensates for the lack of communication with peers not only in the vocal studio, but also in social networks. The girl has channels on YouTube and in Tiktok, where she uploads a video with toys, conversations with friends, videos where she seems to sing songs of her favorite performers, Koka Koka and Niletto. Recently, Nastya got a group in WhatsApp, "to save animals."

“So far, we just communicate there. For example, I find some ma-a-a-a-a-alley dog. And I buy him food so that he does not starve. We somehow returned home-and I saw a dog, and I felt sorry for him. "

Elena says about the character of her granddaughter: “Leader. Never yield. This rod is good for her in her position. ”

Nastya and her Uncle Misha. Misha 25 years old. Misha helps with Nastya-he leads to a circle, puts a photo in ostezes: Maria Ionova-Gribin for TD

With new acquaintances, Nastya converges with lightning speed and immediately begins to command. For example, soon the family moves to another apartment, and the girl has already managed to get acquainted with neighboring children.

“Three boys in the yard, six years old. She immediately took them to her hands. She said: “You train the dog incorrectly, but I will come to you soon. Wait, wait,” says Elena.

If the same stubborn child comes across, a scandal will happen. Elena recalls that in the sanatorium, where she drove Nastya to rehabilitation, the girl met with the same leader, also a wheelchair boy. “This is right up to fights, we can say. We used them straight. ”

“I had a favorite there ...” At first, he speaks vaguely about the rest in the Nastya sanatorium. - Well, in love, in short, it was!

- Maxim. 27 years. Head of the cultural sector. All the girls got into it, ”Elena laughs.

- Well? Is it true! I fell in love with him! - the girl is indignant.

Maxim even once danced with Nastya a slow dance at the disco, at the request of her grandmother. When asked what she liked Maxim, the girl replies: "Just beautiful."

Elena says that most often those around him are kind with Nastya. True, three years ago one boy laughed at her stroller - and the girl cried for a long time. Then the grandmother taught her to reception, which I saw before the singing: to tell everyone who laughs at her that she is a mermaid, and her tail disappears when she goes out into the street.

"Did you queue for a new kidney?"

Elena and Nastya met with employees of the Bifida Foundation, helping people with a spinal hernia. “As if someone was led,” the woman wonders.

At the beginning of the year, Elena drove her granddaughter to St. Petersburg to perform an operation of the feet curved without work. There, at the institute. Turner, the girl saw that other children ride the corridors of the hospital in beautiful multi -colored, and most importantly - light and suitable strollers under their growth. Nastya had Makhin, strong, as Elena says, but too big for a girl. When she chose a rehabilitation means, no one suggested what it should be - and the woman decided to take the stroller for growth.

Recently, Nastya for the first time in her life asked to tell the secret of her diagnosis. After the conversation, they cried with the whole family. Then Nastya washed and said: “All-all, forgot” photo: Maria Ionov-Gribin for TD

The mother of one of the patients recommended Elena to contact the Bifida Foundation, which bought a modern stroller for them. Ergotherapist Elena Shoshina, working under the “Home Visiting” program, came to a meeting with Nastya. She goes home to the funds of the fund living in St. Petersburg and the Leningrad Region, and helps to make their life as comfortable as possible, despite physical restrictions: selects rehabilitation, clothes, suitable games and classes.

“At the Institute. Tourner often there are children in whose regions there are no our specialists, but we do not miss the opportunity to visit them there. We can see him live, meet, tell them that they are not alone, they have support. The curator said that there will be a child, and it would be great to see her if there is time. I went there, ”the ergotherapist recalls. She immediately realized that the old stroller Nastya was not at all suitable: “She is very wide, she is rag. Nastya sagged in her like in a hammock. It was very difficult for her to throw her hands through the handrails and twist the wheels. It was necessary to try very hard, lean forward, give an unnatural shape to the spine. And besides, she did not reach her legs to the step. ”

The ergotherapist measured the girl to choose the right stroller. A new rehabilitation agent worth 200 thousand rubles - five times more expensive than the previous one - brought the girl in June. It is not only more convenient to move on it, but you can also participate in dance numbers. Soon, in the classroom, the children will begin to master the dance to the songs, so that the new stroller came to Nasta on time.

Nastya photo: Maria Ionova-Gribin for TD

But the selection of the correct stroller was only the top of the iceberg. The ergotherapist checked the results of the tests of the girl she passed before the operation. The state of the urethra, which often suffers from paralyzed people, seemed suspicious to it. It also alerted a pediatrician working with Nastya.

“She said such a phrase:“ A person can live without legs, and did you stand in line for a new kidney? You had to go through. ” I stared my eyes. What kind of kudy? It turned out that this is a comprehensive urodynamic study, ”says Elena.

People with a diagnosis of Spina Bifida do not control the work of their bladder. Because of this, Nastya spends all his life in diapers, but this is only part of the problem. When the bladder does not work normally and is not emptied to the end, urine can fall back into the kidneys, causing consequences up to pyelonephritis and even death.

Anxious symptoms bothered Nastya’s grandmother in Khabarovsk, but, according to the woman, the doctors said that the girl’s condition with her illness was good. They could not offer effective methods of treatment. Employees of the Bifida Bifida wrote the girl to see the Moscow neuroister - the expert of the fund. She determined that Nastya needed catheterization four times a day, taught her grandmother to put a catheter to her granddaughter. Elena recalls that at home she, on the contrary, said that this is a dangerous procedure, because of which an infection can be brought into the body. The girl was offered to plant on the pot and press on the bladder.

“The doctor in Moscow said that in no case. And in Europe, children have been catheterization from the age of seven. It’s good that I immediately agreed to go to a specialist. I thought I would come in the summer, but where would I go during the coronavirus? ”

Nastya is studying in the second grade of a regular school, but at home schooling. Learns well and loves to study. At school, Nastya is on the line on September 1 and at a class hour photo: Maria Ionova-Gribin for TD

Problems with movement is that which is striking first of all, when we look at people with Spina Bifida. But much worse - neurourological complications. Often it is impossible to notice to the last until it becomes too late. Now the Bifida Foundation collects money for a program of neuroorological assistance. Its participants will be able to undergo a complete urological examination and receive a route sheet indicating all types of necessary treatment, methods for correcting the function of the urinary system. They will be told in which medical institutions they will be able to receive the necessary assistance in the future.

In order for the program to work, it is necessary to train neurologists and urologists the basics of neurourology, to pay for their travel to the regions, where there are no such specialists, to pay integrated examinations wards. Please support the Bifida Foundation with a monthly donation in the solution of such non -obvious for ordinary people, but deadly for the wards of the fund of the problem.