Don't let them die

The worst thing for a mother and a sick child is to stay alone with a disease

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The little Nastya was rubbed with tincture of vodka on fly agaric, bathed in a decoction of ants and smeared with black oil, a spinned gypsy. Tanya simply did not have the strength to resist the crazy initiatives of older relatives. Having learned about the incurable daughter diagnosis, she was numb. Local doctors themselves did not really know what kind of illness it was and what to do with it, they only scared the prospects of imminent death. The consultation of grandmothers decided, since stupid doctors cannot do anything, we will save the baby ourselves. Tatyana obediently did everything that the grandmothers said, only languidly objecting that she had no money for this. Grandmothers got the money from the cubes and brought home more and more miraculous funds. When the next Grandma Vedenya told Tatyana that all her problems can be solved by simply putting a pillow on the face of a sleeping daughter, Tanya seemed to wake up and stopped this bacchanalia of folk healing.

Nastya photo: Fedor Telkov for TD

Nastya laughs, listening to her mother’s story, rejoices that she does not remember how her relatives steamed ants obtained from a large forest anthill.

Get ready for the worst

This is now there are Internet and messengers. You can find information about any diagnosis, chat with parents of the same children. But 10-15 years ago, parents remained with the terrible news about the child’s illness alone.

Nastya in her room photo: Fedor Tekkov for TD

Nastya was born in a warm May day. The clear -eyed, smiling, with light curls on the crown. The first child, the first granddaughter - the whole family of the soul did not dull her. Nothing foreshadowed trouble. The baby began to hold her head in time, roll over, crawl, walk by the handles. But she went somehow uncertainly. A month after a month did not let my mother’s hands still, immediately slapped on the ass, and it did not go. Quite weak legs. The muscles did not want to get stronger. Tatyana led her daughter to the doctors. In the mound, doctors diagnosed: paraparesis of the lower extremities. And they gave a referral to the sanatorium in the Chelyabinsk region. The sanatorium was offered to go to doctors to Tyumen - "check the muscles with a probe through the ears." The proposal so reminded the Babkin Mukhomora that Tatyana ran to the head physician to find out what kind of probe it was through her ears. The head physician reassured, gave a referral to trusted colleagues in Chelyabinsk. There, the first time the doctors made a likely diagnosis - spinal muscle atrophy (SMA). Not treated. You need to prepare for the worst. Nastya went on for the fourth year. Nastya herself stopped walking. Tatyana returned with her daughter to Kurgan and suffered results to local Aesculamus. They said that a genetic analysis is needed to confirm the diagnosis. He cost, like the whole Tanin's monthly salary of a nurse in the hospital.

On the left: Nastya near the shopping center. Right: Nastya on a walk photo: Fedor TELKOV for TD

The diagnosis of SMA was confirmed. Spinal muscle atrophy is a hereditary disease in which there is a violation of the function of the nerve cells of the spinal cord, leading to the progressive development of muscle weakness, their atrophy and, as a result, to immobilization of the patient. “This is not treated,” they said again to her mother. “Get ready for the worst.”

Nastya in the kitchen photo: Fedor TELKOV for TD

“Once we were in the local hospital, and in the neighboring chamber there was a two-year-old baby and mother,” Tatyana recalls. - Mom was in such a state that I immediately remembered myself. Absolutely lost, devastated. And she was still pregnant, and she was sent for abortion without any tests. I went to the mother -in -law, who visited them, I say: “You can commit suicide with you, she’s so in shock. You must help her, it's very scary. ”

Let her die

Eisners did not dare for a second child for a long time. When Nastya was eight years old, Tatyana became pregnant and, cold from horror, was waiting for the results of prenatal tests. Lucky.

“Are you married? The gynecologist asked in surprise. “And what, the husband did not leave you after such and such a child?”

Tanya and Nastya had to listen more than once. They say that they have long stopped paying attention to this. But at first, each such spit was very injured.

At the first VTEK, where Tatyana came shortly after making a diagnosis to draw up a disability, they attacked her: “But how could you and your husband converge, and what right did you have a child to give birth, and why did he not leave you yet?” Once Nastya got to the hospital with pneumonia and high temperature. Narmed, bypassing the chambers, not at all embarrassed by Nastya, arranged Tanya Podnchka: “What are you tormented by her? Your child had to die for a long time. And you only in vain prolong her life. Tear it, carry it, treat it. ”

On the left: the river near the Nastya House. Right: Nastya feeds birds photo: Fedor TELKOV for TD

A neuropathologist, who was growing up in the hospital corridor, approached the hospital corridor, hugged and said that she does everything right, there was no need to listen to such nonsense. And Nastya, in order to get sick less, you need a special device - a clever. The device costs fabulous money - several hundred thousand rubles. Tanya came home to her husband and said that she needed to sell an apartment. To move to your mother in the village, get the apparatus and save my daughter. Fortunately, I did not have to part with the apartment. The neuropathologist suggested writing to the Vera Foundation. She heard that “Faith” helps children with incurable diseases.

The fact that someone in Moscow will take and just help, I could not believe it. But Tanya was ready to grab any straw so that Nastya lived and breathe. Pulmonary complications and pneumonia are the most common cause of death in children with SMA. The muscles are so weakened that the simplest protection mechanism - a cough reflex - is absent in children with this diagnosis. Sputum accumulates in bronchi and lungs, leading to complications and pneumonia. The cheak helps to cleanse the contents of the bronchi and lungs, imitating the process of natural cough.

The bird that Nastya did

Nastya was sent a clearance. And they called for examination to Moscow, to the Institute of Pediatrics, which they did not even dream of getting into. For the first time in many years, Tanya and her daughter got to specialists who did not have to tell what kind of diagnosis it was. And then the Vera Foundation was also sent by Bipap - a device for non -invincial lung ventilation.

When Tatyana brought the device to the Kurgan hospital to set up, doctors from all over the clinic escaped. Tanya was thrown out with questions: how did you achieve this? Tatyana called from the regional house, asked to advise. She is constantly written by parents of other children from SMA in the Kurgan region: help, tell me what to do. In remote regions, according to Tatyana, parents are completely alone with a disease. After her tips, several more children became wards of the Vera Foundation and received help.

Not alone

Nastya is 17 years old. A charming fragile girl with incredible hair of Aquamarin color. She earned on the paint herself. Nastya studies in the 11th grade of a distance school and has every chance to graduate from a school with a gold medal. He plays the guitar, reads a lot, is engaged in needlework, draws and loves to travel very much. And even so far all the travels are trips to examinations to Moscow. Nastya rejoices any opportunity to get out of the house. And he really dreams of the sea. But so far the main headache is the institute. Where to go further is the main topic for discussions at home. I wanted to go to a designer at the University of Kurgan. But the faculty does not provide distance learning. And Nastya cannot study in full -time.

On the left: Nastya holds one of his favorite cacti in his hands (she collects them). Right: Nastya photo: Fedor TELKOV for TD

“Mom, choose for me,” Nastya laughs. Tanya never wants to intervene and make a choice for Nastya, as her mother once acted with her. Tanya grew up in a village 65 kilometers from the mound. In the nearest district center there was only a medical school, and my mother inspired that it was necessary to act exclusively in it. Other desires and aspirations broke off it like branches of apple tree dried in the garden. Tanya does not want to be a lumberjack. He assures that any nastin will accept the choice. And Nastya now has a choice and future.

Tatyana says when four years ago they received a letter from the Vera Foundation that they were being taken under the wing, she was first released in many years from the day she found out about SMA. There was a feeling that they are not alone. “The worst thing is when the child gets sick, begins to suffocate, and you do not know where to run and where to look for help. It was very scary. "

Veronica, Nastya, Tatyana Photo: Fedor TELKOV for TD

Now they have a coordinator who can write and call at any time. The Vera Foundation helps with consultations of leading specialists, provides equipment and consumables, and helped to purchase a modern stroller. All this became possible thanks to our help with you.

Yesterday, Nastya and her mother flew to the annual examination to Moscow. That is also an adventure: Nastya in a stroller, a large suitcase, two devices, a backpack. In Moscow, there are aerolifts that raise a little mobility aboard the aircraft, and in the mound they just men take Nastya along with a stroller and carry on a ladder. Each time Tanino's heart freezes, suddenly stumble, suddenly dropped. At the Moscow airport, they were met by the coordinator and volunteers of the Vera Foundation, and it became not scary again.

So far, spinal muscle atrophy is incurable. The Vera Foundation cannot cure Nastya and other children with SMA. But in our forces with you, right now to make the life of Nastya and other children with incurable diseases as comfortable as possible. So that they can smile, watch, create, make friends and communicate with peers. To be able to live and enjoy every day. Please support the work of the Vera Foundation. Help any feasible amount or subscribe to a monthly donation. Even a hundred or two hundred rubles donated from a pure heart can change children's life.