This cozy, bright clean and welcoming the apartment at first glance do not feel any pain and suffering. Mistress-mom is drinking tea (not coffee, pressure), tiny — year-old blonde Daniel pacifier, welling around the sofa. In the bedroom, covered with a blanket, sleep under the TV’s eldest son, Artem. But this idyll is only a picture. In fact, the Theme, and Danny is seriously ill.
In 25 years, Marina gave birth to her firstborn son, Artem. The boy was slightly below peers, but it didn’t bother any relatives or doctors. He grew, developed, ran, played with friends. It lasted 6 years. At one point the happiness of the little family Pivovarov collapsed: standing at snow hill, the Subject admitted to the mother that is not able to climb on her “legs hurt”.
“My son has always been thick, stout calf muscles, — Marina tells. — So what, we all have our figure. I thought that my son something with his legs, and we began to be surveyed”.
Marina took my son for all professionals, from the pediatrician and ending with the nephrologist. The diagnosis was able to identify immediately, and it sounded like thunder from a clear sky — a progressive Duchenne muscular dystrophy.
In his childhood Artem did not differ from peers. Photo: AiF/ Nadezhda Uvarova
Any medical books at the request of the term given that it is “most acute, progressive, bright and the most severe disease from the group of hereditary progressive muscular dystrophy”. The essence is to ensure that the child eventually appears complete muscle weakness. The disease is hereditary, genetic, occurs because of a lack of dystrophin, a protein that supports membrane integrity of muscle fibers. Myopathy Duchenne dystrophin at all, when milder forms of a number of his body remains.
The topic began to go to school. Marina managed to save up the money to bring their son to the sea. It turned out that calf muscle looked like inflated is one of the external manifestations of the disease. Soon Artem began to walk only leaning on a cane. Then lost the opportunity. Now 15-year-old 9th grader studying at home. He is far behind in physical development from peers, his body looks dystrophic due to the complete lack of muscles, he is helpless and is unable without mom even roll over on its side when the back or the arm will go numb. The theme is items only orally, and it is unclear how he will pass the exams. But most importantly — she already heard many times from doctors that these patients are prone to disorders of the myocardium. Because of the damage to the heart and the growing weakness of skeletal muscle with a violation of the respiratory function, they die at the average age of 20 years.
Card of the eldest son of the Marina. Photo: AiF/ Nadezhda Uvarova
Children — the meaning of life
Marina in horror rushed to be examined. It turned out that indirectly to blame for her son’s illness… she is. Disease linked with X-chromosome, therefore it affects only men. But they inherit it from their mothers, carriers of the disease.
What to do? “Nothing,” almost in unison answered the doctors. Because the disease is hereditary, it is not treated. You can certainly extend the life of the child and to make it easier: use massages, restorative drugs, physical therapy. “Bring forth quickly the second, almost shouted her older geneticist. — Are you only a girl!”.
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Marina asked Rodney, how is it, really, the disease was in her family forever? Why no one ever talked about it? Parents are no longer alive, the only close relative, an older sister, has a daughter, because her problem is not touched. An elderly aunt said that like during the war in their family was one man, her brother, who quickly died, and “he had something with legs”. But at the time no one knew the reasons for sudden death: the time hungry, genetics is a branch of medicine was not developed.
Next ten years, the Marina, sobbing nights from injustice, had planned a girl. She was married to another man and hoped that God would give a daughter. The specialists helped her schedules, she relied on the people’s councils. Each new pregnancy when she went for an ultrasound to determine the sex of the child seemed to be flour.
During one of pregnancies, sex of the child could not identify, he spun. Pivovarova has proposed to identify it with a biopsy, when a portion of the material is taken through a puncture in the abdomen mom. Marina has suffered a terrible procedure. The verdict: son. And again abortion medpokazaniyam…
“And then could not once again to determine who will — says the woman. — Stretched. At 12 weeks, it was found out that again, boy. To abortion later. Sent on premature births for medical reasons. I after anesthesia you open your eyes and see the soul of the son unborn, which to the sky escorted. I nearly went crazy.”
Comfort Marina found on the grave of their parents. Will priydetsya, and home to the city, where work and sick Topic.
Marina gave dear cat of don Sphynx breed. “Patient too — sadly she said. — Expensive, but the eye was not hurt as a pirate was. I told him the surgery was paid for, the ears were treated, put in order. Cheops is the name on the passport, and we easier, Tail-called.”
But the Tail Marina was cured. Photo: AiF/ Nadezhda Uvarova
Cat gives Marin a love full. Rests on the chest and spreads legs, hugging his neck. “Oh, if the son could be cured with one operation,” cries Marina Pivovarova.
All the son…
Two years Marina had not become pregnant. And still dreamed of a crazy child. She was afraid even to think about the day when Artem will not, and she will be alone in the world. Again the pregnancy. On padded feet she walked on the ultrasound, keeping in mind that became pregnant in strict compliance with all recommendations of experts. No, son. Marina ran to genetics: how can this be? “There is, in addition to our smart computing, the Lord God,” he heard in response.
And she decided to give birth. She’s 38 years old. Not the fact that she gets pregnant again. There is no certainty that it will be a girl. No guarantee that she will carry the child. Experts are not discouraged. Marina gave a 50: 50 will be transmitted if disease second son. As is known, no condition passes to the descendants with absolute assurance.
Daniel’s mom specifically gave the Church the name. Although Marina to the last, yet did not know results of ultrasound, talked to the fetus as a daughter. “Waiting for the Cook,” she recalls.
Dan was born a big, healthy baby — 7/7 Apgar. As with the first son, baby nothing indicated the terrible disease. The other day a blond baby turned two, it’s time once again to hand over analyses on presence/absence of the disease.
“Daniel isn’t talking yet, — said Marina. — Walks waddling, a bit like all children. It may be early signs of Duchenne muscular dystrophy, and can not be.”
The result of the analysis of the two-year genetics Daniel plunged into shock. Photo: AiF/ Nadezhda Uvarova
Seeing the results of the tests that Marina gave in the clinic, a geneticist once said to the great misfortune, the disease was passed to the second child. Where the result should be no more than 300 units, the baby 17 000. These are huge indicators that the specialist centre made a PostScript: “Checked twice”. And Danya is also Duchenne muscular dystrophy.
Dan doesn’t speak and doesn’t walk like everyone else. Photo: AiF/ Nadezhda Uvarova
What to do?
Marina is heartbroken.
Says, the feeling that someone has cursed her entire family, in an effort to notify the men that were born women. Who and for what? And yet — why this happened to her? After all, Marina never drank and never smoked, she’s an athlete-athlete. Still, and marine 40, is in excellent physical shape. “Girls over drunk-walk, and give birth to healthy kids, their husbands are on hand, do not give to work”, she wonders.
In this case, she, being in the decree, not a day of rest. Got to wash the floors in the nearest College. Working day — from 6 am to 8 am. While the kids are asleep. Because she can’t leave them for long. From her husband of almost no help: he can’t find a well-paid job. After graduating from College, Marina worked as a foreman in the housing office. And now even manages to get a higher education, enrolling in a budget of Chelyabinsk University, and even is one of the best students of the 5th course.
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How to help?
Marina asks to pay for treatment of children abroad is meaningless. Nobody invented yet, how to defeat Duchenne muscular dystrophy. “I have a friend in Israel — she said. — I told her everything. She answered honestly, of course you can come, rehabilitation will be carried out, but to cure Artem we can’t. But to arrive at the clinic costs a lot of money.” Marina beats as you can, never complains, lack of sleep and falling from exhaustion. Living on a pension of the eldest son of 12 thousand rubles, and her modest salary cleaners. Only after a long heart-to-hearts admits: it is difficult for her. Need money, really need. Flew the engine in the car, and she’s without a car? He need a new mattress, orthopaedic, bed in good specialized, oversized carriages, the door does not pass… Almost always she wears son in her arms. “Muscle out as the Hercules has sadly joked. But it’s easier than to carry it, to carry the wheelchair, and then to combine the two burdens”. The most offensive — for a long time it cannot ensure that the Topic identified the permit on SANATORNO-resort treatment, although in the conclusion of health professionals this item is one of the first among other recommendations. The subject can’t be helped, cured completely, but give the opportunity to become happier, breathing fresh air and watching the sky and the forest, you can! Marina says she denied a ticket, referring to the fact that “suddenly his heart in a sanatorium stop, what are we going to do?”. Heroic mother says, when she was able, she took him to the lake Turgoyak in the sanatorium. He enjoyed it very much too, and it was easier for the son to sit on the beach, ride in the stroller not in the apartment, and along the beach, breathing fresh air, not Chelyabinsk emissions from factories. That in a few years all this will happen again with Daniel, mom hasn’t thought.
Marina turns son 5-6 times a night: he is completely helpless. Photo: AiF/ Nadezhda Uvarova
“You know, I never asked for help — says Marina. Better earn, porches wash, I’m not ashamed. Once heard: “why give birth? Once failed, yet it was clear my fault.” I didn’t bother to explain, say, why do you want to have children and be happy, and I’m not, in your opinion? Since then, I’m afraid that’s all the judgment and misunderstanding”.
If you want to help Marina Pivovarova, Artyom and Daniel published a map of Sberbank Marina: 639002729019806709.