Unique

The brand was still called “horned”, “vegetable” in the womb and told his mother that he might not survive before birth. Now the boy is four years old, he laughs, communicates, plays football. Who helps Mark and other children with a difficult diagnosis of Spina Bifida?

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

A boy with a rare diagnosis

- Tell me, please, who are you? - Mark asks, looking up from a bottle of milk that his mother gave him.

Mark is not satisfied with the “journalist” answer. He closes his eyes, shakes his head and explains:

- So I drink milk - and I am a bull. Please tell me, who are you?

Mark Photo: Pavel Volkov for TD

- Oh, he will speak you now! - laughs Irina, Mom Mark. - We do not leave the yard until he with all the grandmothers at the entrances will say hello or chat.

Ira strokes her son on the head, then straightens his legs, fixed in plastic orthosis - one leg turned out so that it hurts even to look at her. But Mark does not notice this: he does not feel anything below his chest. This is due to its diagnosis, splitting the spine, which is also called Spina Bifida. Such congenital pathology has several subtypes, the brand got the heaviest.

- Tell me, please, have you come to me specially? Right in Elektrostal did you come to me specially? - Mark looks incredulously at me through long eyelashes.

Mom Irina puts on the brand of orthosis photo: Pavel Volkov for TD

Mark's family - he, his mother and older sister - live in Elektrostal near Moscow. Here the diagnosis of Mark is a rarity, even in clinics, not everyone dealt with Spina Bifida; Often the visits of doctors turn into consultation, only they give them not a doctor to mom, but she to them. Over the four years of the life of her son, Irina became a specialist in Spina Bifida. But the first clash with the disease was a shock for her.

"Who was the horned to us?"

“Pregnancy was the second, planned, I prepared. Vitamins, tests, screening, ”Irina lists. - And on the first screening, I remember, the doctor told me: “You have a wonderful child!” Not even so, he said - brilliant. Yes, a brilliant child ... "

Mark Photo: Pavel Volkov for TD

But after the second screening, which is done for a period of 18 weeks, Irina said an additional examination by the geneticist. The route to the desired specialist for the resident near Moscow was long. Irina, explaining little to her, was driven from one clinic to another. In the Balashikha hospital, she heard from the doctors: "And who was the horned to us from Elektrostal?"

“I prayed: what kind of horn, what horns, I don’t understand anything at all, explain! It turned out that on ultrasound, the enlarged ventricles of the brain are so seen - like horns ... "

In another hospital, Irina explained: enlarged ventricles - a symptom of hydrocephalus. In addition, her child has a spinal defect and hernia of the spinal cord - the same Spina Bifida, and how serious it is - will be visible after childbirth.

Mark Photo: Pavel Volkov for TD

Now, babies with Spina Bifida can undergo an operation in intrauterine: sew up a hernia, seal everything that has not closed naturally. After such an operation, the quality of life of children improves significantly - for example, they can learn to walk. But they do intrauterine operations at the gestational age of 22-26 weeks, and Irina first heard the diagnosis of the child only in the 30th week. Late diagnostics and general ignorance of Spina Bifida led to the fact that Irina could only wait for Caesarean section and hope that the child would live.

Five minutes twice a week

“He was born and breathed, even shouted. They showed it to me, not with his face - a back, ”Irina recalls. “He did not have a skin there, not his back, but such a large blood spot, covered with a thin film.”

Mark Photo: Pavel Volkov for TD

The brand was immediately taken to intensive care and four days later was operated on for the first time - they “closed” the back with a flap of donor skin. Mark spent the next three months in the hospital, and his mother came to him twice a week for five minutes: they were no longer allowed.

“From our Elektrostal, I went to the Lyubertsy, where he was lying: a minibus, an electric train, a minibus. I have no car. Three hours one way. They carried it to me - and he is under sedative, lies like inanimate. I’ll look at him, touch the pen - and it's time to leave, ”Irina brings her tears. Her eyelashes are long, like a brand. - In general, I try to live positively, but there was no strength. And the first year was the first without him ... So after the holidays I came to the hospital and said: Or you put me to him - or I take it. And they gave it to me! ..

Mark Photo: Pavel Volkov for TD

I was afraid to touch him, dressed like a fluff: well, how would something come off there? And I drove home - I was afraid. And most of all she was afraid that he would remain as in the hospital. But in a week he came to life, he began to react, look. And he became like that, as it is, our Markushka. But they scared me - it will not speak, it will not understand ... "

Mark, who was transplanted into a high chair with support, is concentratedly sculpting the figures of the turtles from the kinetic sand, commenting on each of its effects: "Pour ... slam ..."

Mark Photo: Pavel Volkov for TD

“I would like to bring it to them and tell them: here, look at the vegetable with which you scared me! He says better than any adult, ”Irina no longer cry, smiles.

"We understand your tears"

Of course, after one operation, the state of Mark could not improve significantly and for a long time. By eight months, hydrocephalus became a serious problem - in the photographs of that time, Mark has a disproportionately large head, pronounced strabismus.

The situation was supposed to fix the situation to install a shunt. In the hospital where the brand was conducted from birth, they could do the operation, but set a condition: the shunt family should buy it itself. Irina had no money for such a purchase, it was impossible to spend on a shunt the funds of maternity capital by law.

“In the Pension Fund, they told me:“ We understand your tears, but we cannot allocate money, ”says Irina.

Mark is going for a walk photo: Pavel Volkov for TD

Money for the purchase of a shunt - 70 thousand - was collected and occupied by acquaintances. But before the operation, Irina Naudach decided to write in the Morozov hospital in Moscow with the question if they would take Mark there. She was answered almost immediately. The brand was quickly operated on, putting a free shunt, and also picked up another drug therapy. All this helped.

But the most important result of that hospitalization, Irina is considered to be acquainted with the Bifida Foundation, which the mother of another patient told her about.

“They are huge well done! - Filuses at the mention of the Foundation Irina. - Most importantly, they in a timely manner inform mothers in a position that encountered such a diagnosis. Who knows how many problems we would avoid, I learn about the fund before ... "

Family "Bifida Back"

After Irina and Mark became wards of the fund, many new people appeared in their life. Doctors of various specializations, ergotherapists, lawyers, and most importantly, children with the same diagnosis and their parents.

Mark on a walk photo: Pavel Volkov for TD

“We have a chat for three hundred people from all over the country here,” Irina opens a messenger on the phone. - We share medicines, joys, sorrows ... We are as one big family. This is easier. In the morning you wish a good morning, someone will ask you at lunch how you ate. ”

Thanks to the lawyer of the Bifida Foundation, Irina was able to correctly draw up Ilyo Mark - an individual program of rehabilitation and abbreviation, the main document for a person with disabilities, in which everything that he can rightfully receive from the state. It turns out that Mark with his diagnosis has the right to much, but the compilation of an IPRA looks like a cunning labyrinth - without the help of a knowledgeable lawyer, you can’t pass it. But with the help you can, for example, get a so -called active stroller - a mobile, easily controlled hands. In such a stroller, Mark can not only move independently, but also play football. Yes, he plays - so famously that he even manages to intercept the ball from completely healthy players!

Irina and Mark Photo: Pavel Volkov for TD

And the fund also sent Mark for a consultation with a neuroister. The fact is that one of the most vulnerable organs in people with Spina Bifida is the kidneys. Due to the lack of sensitivity below the thoracic region, patients such as Mark cannot track pain and discomfort, cannot complain about them. Standard ultrasound and other examinations also do not show specific problems. Meanwhile, when Mark was consulting a neuroister, it turned out that one kidney has practically no longer functioning.

“It turns out that for us it is not primary surgery or orthopedics, namely urology,” explains Irina. - Hands work, your head works - you can live actively, ride a stroller, communicate, even play sports. But we will not live with non -working kidneys. The kidneys do not work - it means that you are attached to the apparatus, to an artificial kidney. This is a completely different quality of life. ”

To improve the situation, the neurourologist appointed the brand catheterization, and Irina mastered another skill - to put catheters, and with the help of the fund's lawyer, he begins to undergo another labyrinth - the introduction of catheter in IPRA.

Mark Photo: Pavel Volkov for TD

"But now I'm not scared at all, do you understand?" - Irina smiles broadly.

"Tell me, please, do you like to dance?" - Mark asks, looking for music videos on his mother’s phone.

In order for the Bifida Foundation to support dozens, hundreds of families such as Irina and Mark's family, he needs your help. Donations will be aimed at competent, systemic support: timely information about the diagnosis, the correct routing of patients, legal support of families. Thank you!