To live with a diagnosis of "spinal muscle atrophy" is sometimes impossible for several years. Alexander Moiseenko from Zhabinka was lucky: he was 32 years old, and he can eat independently and breathe. Traditionally, in Belarus and the world, the main assistance is aimed at treating children, about patients in adulthood recall less often, whether oncology or genetic diseases. Now, thanks to time and science, non-indifferent citizens actively organize fees and are trying to prove to the state that human life costs $ 2 million - this is the price for the medicine to people with SM. In the nineties, Alexander was also a child with spinal muscular atrophy, but at that time the disease was considered incurable. Belorus recalls how doctors from hopelessness told his parents: "Soon". But the young man continues to live, learn from a new one and look for his place among healthy people.
Short Likbez
Spinal muscle atrophy (SMA) - genetic neuromuscular disease, leading to increasing muscle weakness. Smya gives the absence or defect of the protein that ensures the survival of motor neurons (SMN protein). The disease can manifest itself at different ages, and it almost always progresses. At first, the sick feel weak in the muscles of the legs, the muscles of the whole body are gradually weaken - until those who are responsible for swallowing and breathing. It is important to understand that the intellect of people with CMA remains completely saved.
There are five types of SMA - from 0 to IV. The extent depends on the time of manifestation of the disease and severity of symptoms: the earlier the manifestations begin and the symptoms are pronounced, the skin is aggressive.
Photo: Togetherinsma.com.
The toughest types are 0 and I. Zero manifests itself, as a rule, at the 30th week of pregnancy Mother: the child's mobility is reduced. Often such children die before, during or soon after birth. Symptoms of SMA type I appear in newborns, and the disease progresses pretty quickly. Usually these children do not live up to 2 years. SMI II type is manifested in the first or second year of life: such children can sit, but walk - no longer. Symptoms of SMII type III can manifest themselves in childhood or in adolescence, people with this type can sit and even take a little bit. SMI IV type is already manifested in adulthood, as a rule, people over 35 years old. Their muscles weaken slowly, and gradually a person loses the opportunity to walk.
Patients with II and III types can live as much as ordinary people, but they have respiratory and other complications over time.
Now in the country at least 86 children and 41 adults with SMA different types - only 127 people. But they can be more: the register of patients with hereditary neuromuscular diseases is carried out only year. In addition, it is believed that such a breakdown of the gene is at about 1 out of 6 thousand newborns.
Relatively many people talk about the treatment of children with spinal muscular atrophy: people sympathize with the kids and actively collect money for their treatment. Adults even do not even have to count on such assistance.
According to the Public Association "Genom", we have 41 adults in our country with such a disease. As a rule, they have II-III type SM, less often IV. In these cases, the disease progresses slower, but the final for all is about the same - the device of artificial ventilation of the lungs and life existence in a vegetative state with a preserved intelligence.
"In Moscow institutions, they treated me as an exhibit"
Our hero Alexander is sick II type of SM. The man was born in Zhibanka 32 years ago. His mother then told that Alexander was born in a completely healthy child, was heavier and developed than peers: quickly learned to stand on his feet and sit. For a half, he began to walk in a closure, turning off his foot on his leg. Doctors said that the boy is just lazy, then - that he has a flatfoot, later - incorrectly involved in the pelvis. After the visit to Professor, a suspicion of SMA appeared.
- Then it was incurable and little studied. For the first years, four moms took me on doctors to other cities and countries, to the last one believed that he could cure me. Then she recalled that in the same Moscow institutions they were treated as an exhibit: they led students, they requested to show a language and no treatment or rehabilitation. Yes, they called the diagnosis, but everything was reduced to the fact that "he will die soon." The same was the same before the school. Parents said that such children live a maximum of 16-20 years, "the man says.
Nevertheless, 12 years ago, Alexander crossed the maximum forecast. He remembers that then could still roll over in bed and control the mechanical stroller hands. Now he has such an opportunity. At night, there is a telephone next to him, and parents come on a call to turn their son. The stroller is only electric. Over time, everything becomes only worse.
One of the first bright memories in his life is a 12-year-old Alexander's trip to the camp in Evpatoria. There, he first met many acquaintances and actively communicated, but also first encountered the degrading behavior of random passersby. He says that both adults and children could poke into him with his fingers and long look at the stop.
- In childhood, I was disturbed only that I could not walk and was weaker than others. For the rest, I was everything like everyone else: interests, hobbies ... Understand everything I started at 14-16, when I ran school. Then the scoliosis manifested me, and I understood that it was not worth waiting for, "he remembers.
Alexander studied at home, graduated from school with a certificate of 9.3. He describes his socialization with one, but very capacious word - "Hrenovo". It was not interesting to be friends with him, he believes.
"I studied at the university to prove to myself that I could"
After school, the guy entered the University of Brest for correspondence into accounting. The specialty accounted for not in interest, but by physical abilities. Alexander represented that accountants are sitting at the table and consider it - such an option came to him. Belorus says that he had to learn to be paid: no benefits for people with disabilities were not provided. Applying to the Ministry of Education - in vain. True, then Alexander "knocked up" a discount due to good performance.
"When I was going to do, my teacher of mathematics - she was very rational man - I did not understand why I need it, and said that I would just spend time. Then I was offended and tried to prove to myself that I could. But in the end, I realized that school knowledge was useful to me more than university, - a man smiles. - In the university, we had to climb the fifth floor with the Father, and for a ten-minute change from there it was necessary to have time to another building on the fourth floor - to the next lecture. We asked to enter the position and make lectures on the first floors, but the Zavorkapler gave a simple answer: "We did not call you, this is your choice and a decision, not suitable - deduct, another will come to your place.
While studying Alexander saw his part-time teacher with huge packages of folders with documents: a woman was in a hurry for a lecture and complained that you still need to run on tax. Then the guy doubted that he could work in the specialty.
The University Alexander graduated in January 2012 - then the social service offered him a job for $ 100. Such an opportunity was filed as a heroic act, a man recalls. In case of employment, disability allowance is canceled - practically the same money. Firms were seriously not burned by the desire to take a disabled person. But the guy does not believe that his illness is a big obstacle to work that does not require physical strength, because his brain works fine.
- And it is almost impossible to get a small town without a Briton. Since 2014, I earn at least small, but some money on the Internet: first I was engaged in copywriting, created and optimized sites, then I worked as an administrator on the forums - I managed to earn even $ 400 per month. And now he opened his IP, engaged in trading. This, of course, is more correct to call speculation, but the market is so arranged, - he smiles. - In general, as brought up, I do it: I count only on your strength.
In addition, for some time he created his youtube channel and lectured on accounting. He says when the first sum from the audience was received, was shocked: it seems to be broadcast all that it has long been known, but only understandable language - and people are ready to pay for it. One day, he earned six times more than his monthly salary. With his head plunged into his project, but later went to traders. Now Alexander wants to develop and find a good employment, be a useful and economy.
- I am ready to work anywhere: in principle, I am easy to study. I just can't work in design: I know how to draw, but not to draw - no, he smiles. - I really liked the period when I was the forum administrator, at the same time I did the tasks of the manager.
"People sometimes ask the question:" And how do you go to the toilet? ""
Now half of the day Alexander goes to work, half - to overcome the disease. At 32 years old, a man weighs about 23 kilograms, eats only soft food. But he was still lucky that he could breathe and eat without special devices. Alexandra is now scoliosis of the last stage with the deformation of the chest, the organs moved not according to the rules: for example, the left kidney is under the stomach.
The most important procedure in the morning is to wear an orthopedic corset: without him, Alexander cannot function during the day. To put on the corset helps his mother, as with most of the banal cases, for which physically healthy people leave a few minutes.
- People sometimes ask the question: "How do you go to the toilet?" In the sense? To the toilet. It is clear that I myself can not move from the stroller, but everything happens as well as other people, "says a man. - 90% I envy leaves. Clean your teeth and I can independently, I just can't cook.
In winter, he is chosen for a walk about once a month: it is more difficult to get to the same Brest, and Alexander quickly freezes, because he has almost no fat layer. In the summer he leaves to take a walk once a week. Every day, before work, Alexander knees hands thanks to a small dumbbell. If this is not done, the process of atrophy will get to the hands.
To organize the collection of funds to the drug Belarus is ashamed: he believes that it does not particularly deserve and it looks like a petition of alms. He has already come across such in the church, when he just visited the service: People have left him coins with anyone. And after interaction with the system and bureaucracy, a man does not see the meaning in circulation for help to the state. Nevertheless, Alexander sees a huge plus in his life.
"Fortunately, the disease hurt only my physical condition," he says.
If you want to help Alexander with work, write to him in Telegram on the nickname @alexander_moiseenko.
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