One hundred lights in the head

The name Eldar means "Fiery Warrior." He knows how no one knows how to fight with fire. Eldar burned every day - congenital epilepsy, a gene mutation, 40 attacks per day, medicines do not work. And the telephone pipe with the voices of relatives hinted: "Yes, you yourself are to blame"

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“He was twisted back. Eyes ran in, began to roll over the eyelids. The muscles of the face began to twitch. He was swimmed, I did not see his arms and legs. But she knew that he was bending. What hurts him, ”Tanzilya purses her lips and measuredly, like a doctor, mints the symptoms. She is a doctor - a children's neurologist. Her main patient lies nearby and lingering, greets on a high note-“aa-a-a-a” (loves video communication, explains Tanzila). A large black eye appears in the frame, a sheaf of fluffy eyelashes, hands and blue tights flash - the Eldar lies on his back and scatters air with his arms and legs, like a small bug. In his year and eight, he knows only that. “Development is very slow,” says Tanzilya.

In her native Nalchik, she worked in two works - in a children's clinic and in the pathology department of prematurely local children's hospital. Therefore, when Eldar had an epileptic attack a few hours after the birth, she immediately understood everything. More precisely, I understood my head, and my heart quickly wrapped all the medical experience - it couldn’t be, it seemed, "he went crazy with joy."

Tanzila and Eldar Photo: Anna Ivantsova for TD

They planned, prepared, even before pregnancy they took tests - everything is clean, no infections, no adhesions, nothing. Here he is, their full set of mom-dad-daughter-son, her husband dreamed so, he was waiting, so proud. What are the attacks? Where? They have 11 brothers and sisters for two, and everyone has everything clean. They have Elmira, three years old, the princess - everything is clean. No, impossible. Forget, do not think.

Everything was repeated at night - Tanzila turned on the camera on the phone, and then with the dark corridors she carried Eldar to the doctor on duty. She looked at the record, then looked at Eldar, who “was perfect outside the bouts,” and shrugged: “A normal baby”. Other doctors who saw him for 10 seconds on bypass, and nurses also thought. “They looked at me like“ Mom-doctor has gone crazy, ”Tanzila recalls.

Garlands

And Tanzilya herself seemed to look at Eldar through 3D ocher and clearly saw what others did not notice: the attacks twisted Eldar constantly, sometimes with breaks at three hours, sometimes half an hour, sometimes in three minutes. Tanzila knew that every attack is a round in favor of fire.

Tanzilya photo: Anna Ivantsova for TD

“When we touch hot, Impulse goes into the brain. It is processed by a certain zone, and in a chain, as in a garland, there is a light current - the signal to reduce the muscle. We pull out a hand, ”Tanzilya explains the nature of epilepsy with simple, non -medical words. She is a doctor, but her husband, daughter and relatives - no. Surely they asked her a hundred times what happened to their boy and why exactly with him, and she learned to tell. - And an attack is a hundred garlands together. When one garland shines, it is beautiful. And take a hundred pieces and connect in one. There will be such a nursing, such terrible chaos in the head. Therefore, a person begins to shake, his eyes roll up, brain cells simply can’t withstand such an intensity of current . ”

Eldar's garlands exploded, leaving behind the destroyed cells of the brain. Tanzila insisted, and nevertheless he was put in the department of the pathology of premature babies, from there-in intensive care. After the MRI, it became clear that she "did not go crazy with joy." An innate vice of the development of the central nervous system. Pharmacoresistant congenital epilepsy. Pharmacoresistant is when anticonvulsants do not help.

Eldar photo: Anna Ivantsova for TD

Neither a month nor after two Eldars from the hospital were discharged. Kabardino-Balkaria at some point gave up: we can’t cope, go to Moscow. Hospital - Airport - Hospital. Another month, Tanzila and Eldar spent in the Moscow RDKB named after N.I. Pirogov. It became only worse from drugs - a continuous picket fence for EEG , loss of consciousness, Precom. There was only one thing left - to do the operation, to save the second hemisphere, which the garlands have only been lit so far, but not burned. But in three months they are not done to anyone - you need to grow up to at least six. Tanzila and Eldar returned home and began to wait. The "terrible inflammation", as it turned out, has not even begun.

"It was endless"

“They barely subnopted before the operation,” Tanzila sighs and turns on the doctor again. - He went to the epistatus many times. Epistatus is when the attacks do not stop at all for a second. It threatens life, heart or breathing may stop during an epistathus. Any body can refuse. Eldara was not just shaking, but twisted. Hands in one direction, head in the other, the eyes are just white, because the pupils went to the hell where, they were not visible. It was endless. Just wild horror. "

The maximum doses of anticonvulsants, miorelaxants sedates , after which there was a multi-hour shutdown, and after the garlands began to blaze with a vengeance. After this, the husband found a quiet angle and cried. Mom pasted even after the diagnosis, having heard her "knowledgeable" friends, called and shouted: "She will be a vegetable!" Other relatives were afraid to call at all: why once again ask how things are, when it is clear that “business is bad”? Those who decided, as a result, rolled up to "jinxed" or "you have some kind of virus, so the child is sick."

Eldar photo: Anna Ivantsova for TD

Colleagues with whom she worked at neighboring tables disappeared, fell silent. Only Princess Elmir did not tremble: at three years old I figured out what to do when my brother had an attack, - I approached, hugged, kissed, whispered, Bayukal. I accurately calculated the power of hugs - so that I felt that they were holding, but did not squeeze it, so that nothing would break, because you won’t stop and win, no matter how you try. Eldar calmed down, calmed down.

But before strong bouts he always shouted: "Mom!"

Not pushed away

Tanzila prayed both in a Christian and in Muslim, she was silent, attached (“Well, I can’t cry with people”), studied the work of German and French doctors, learned to decipher the EEG, explained to her husband what, how and why was burning in Eldar’s head, and, explaining, calmed down. She also calmed down after talking with the curators of the Plus Foundation for Children, to which they were sent by doctors from the RDKB - Eldar, on the quota, and the examinations that had to undergo the operation, the money, the doctor on maternity leave, and the dad, the watchman of the kindergarten, was catastrophically, were sent.

Video-eag-monitoring, which takes several hours and costs from 8 to 15 thousand, is the right way to find foci of seizures, evaluate the risks of surgery, understand how to protect important brain zones. Thanks to the Eldar Foundation, they monitored three times: two in Nalchik and one in Moscow. Even before the operation, he was prescribed genetic tests-they allow us to understand where the garlands came from. To determine the cause of the breakdown means to understand how the disease will develop and how to live with it further. There is an analysis of 35 thousand - this money was also collected by the fund, and Tanzila simply “came to the clinic and received what was needed”. It turned out that Eldar got a mutated gene, which was not manifested by any of the huge Kabardino-Balkarian family. He is the first warrior.

Tanzila and Eldar Photo: Anna Ivantsova for TD

“Plus help for children” was in touch all the time and did a lot of what even the most persistent warrior remains in the field alone and is defeated, for example, he organized consultations of the famous specialist in the pre -surgical diagnosis of epilepsy of Dr. V. A. Chadaev, who still conducts Eldar. For the family, they are free.

And the curators called - find out how you were doing. And they knew what to say, even if things are “bad”, and they could not help right now. “Thanks to the curators. Polite, friendly, responsive. The dialogue was always built in this way that it was pleasant. There is no feeling that you have been pushed away, ”Tanzila immediately caught on: she does not claim to be any special. But here is not special, just human. With the Foundation “much easier” even now, when the war seems to be won, the garlands have gone out.

"I don't care, if only ..."

At seven months, Eldar was still operated on-they opened the skull and cut off one hemisphere from the other, leaving only thin bridges of blood vessels. Scar from forehead to crown, possibly for a lifetime. “It will be combed on the right side so that it would not be visible,” Tanzil brushes. “I don’t care, if only ...” When an MRI was done in the RDKB a day before the operation, it became clear: it was impossible to wait, it is about to blame and in a healthy hemisphere. Two months after the operation, Eldar basically slept, and when he woke up, he began to look around anxiously: would he blame again? Not blazing. Neither two months later, nor after three, nor in a year.

Eldar photo: Anna Ivantsova for TD

“Glory to all the gods, the attacks ceased. Absolutely, ”says Tanzilya, with difficulty restraining a victorious smile. It is too early to rejoice, such interventions “into the brain” do not pass without a trace. Tanzila is selected again, stretched, enters the “medical” mode and recalls their second operation - complex, combined, with protracted consequences. On the brain of Eldar crushed a cerebrospinal fluid, which had to be urgently “withdrawn”, otherwise the edema of the brain - and the inevitable death.

Again endless tests, MRI, going to doctors. Again “plus help to children” in the tube: “Yes, wait a bit, we will collect the money.” Again, two holes in the skull and a whole pump behind the ear - catheters, tanks and a tube from the ear to the abdomen, along which the liquid from the head flows into the abdominal cavity and dissolves there. A huge bump in appendage to the scar. And also a rollback in the development that began after the first operation: Eldar stopped talking, holding his head, forgotten how to play. After the second, he refused to turn over on his stomach: the tube was sick. He simply lay and “sang”-so Tanzila calls him “aa-a-a-a-a”, which by the year and eight remained the only way to communicate with the world.

"He will go, go to school"

Rolling up in development is not a sentence, he will turn it. There is a chance that the second hemisphere will take all the functions of the first, burned out by hundreds of garlands, and Eldar will walk, speak, study in a regular school.

Tanzila and Eldar Photo: Anna Ivantsova for TD

But this will not happen in itself, rehabilitation is necessary. While Eldar lives on anticonvulsant - pathological impulses are still touching a healthy hemisphere. After the New Year, he and Tanzili will begin to prepare for restoration - and if it turns out that they are not supplied with free rehabilitation, they will call “plus help to children”.

In 2015, the Fund launched the project “Without attacks”. Its goal is comprehensive assistance to families where children with epilepsy are growing, because the expenses for examinations, consultations of specialists and treatment The state insurance system covers only partially. Small donations to the fund are added to the amounts that can save another small warrior. Let's support them. Thank you!