Every year about 20 children hit with Down's syndrome are born in the Russian city of Novosibirsk
Statistics says, one of 700 newborn babies is hit with the disease. About 90 percent of such babies are rejected by their parents. When people hear the sad diagnosis of their babies, they leave them in orphanages.
The Down syndrome is one of the most awful diagnoses; medicine learnt about the disease in 1866 for the first time. British Doctor Langdon Down paid attention to a girl with unusually distinctive features and retard development. Soon doctors began detecting similar children. The set of their eyes is particular; the shape of the bridge of nose and ear conches is specific. Children suffering with the syndrome have bigger tongues that fall out of the mouth, they are retarded in development. In the 20th century, geneticists determined that such children have a different number of chromosomes as compared with normal children. Healthy people have 46 chromosomes, while children suffering from Down's syndrome have 47 ones. It is not clear why this extra chromosome appears thus sharply separating newborn babies from the rest of the world. It is practically impossible to foresee birth of a baby suffering from Down's syndrome. In the forth month of pregnancy women can pass an amniotic fluid test and a blood test, however, the analyses all the same won't give an absolute guarantee.
There is no official statistics concerning the number of children suffering from Down's syndrome in the city of Novosibirsk and the region. However, it is easier to find statistics about such children living together with their parents in families. There are 167 children with Down's syndrome who were not rejected by their parents. Specialists say that such children mostly live in boarding schools; the total number of people suffering from Down's syndrome in Russia is approximate to population of a small town.
In developed countries, babies suffering from Down's syndrome at least theoretically have equal rights with other healthy people; they have an opportunity to get education as well. The situation is quite different in Russia. A year ago a public organization called "Down Syndrome" was created in the city of Novosibirsk. Tatyana Yesipova, mother of a child suffering from Down's syndrome was the initiator of the organization's creation. Main goal of the organization is to fight for normal life to children suffering from Down's syndrome. Is it possible?
Tatyana says that doctors registered no pathologies either with her or with her husband's health. When she undergone necessary tests being pregnant, doctors said everything was good and the baby was healthy. When the baby was born and the woman learnt the son was hit with Down's syndrome, she could hardly believe it. It seemed the world turned upside down for the woman. The husband laid down the condition: if Tatyana keeps the baby, he will leave. The woman couldn't reject the baby. She took Pavel (this is the name of her son) home and studied heaps of special medical literature. There were no reasons for the woman to create illusions: Down's syndrome cannot be cured. However, it is known that if parents pay much attention to such children, constantly teach diseased children to speak and provide necessary medical treatment, such children can adapt to our life. Certainly, they will never become normal people like others but they will be able to live in the society. So, Tatyana Yesipova spent four years creating a particular society for children suffering from Down's syndrome. She got acquainted with parents of other children suffering from the disease. Now they are one big family working hard to help diseased children.
Within the past year the organization of parents has managed to prove that although children suffering from Down's syndrome cannot master technical sciences, they can perfectly cope with humanitarian ones.
Three months ago a city jury gave a high estimate to drawings of Sonya Makogon, a girl hit with Down's syndrome. She turned out to be a better artist than many of healthy children.
The fate of Sonya's mother is also very severe. Her husband abandoned the family; at that he rejected not only Sonya hit with Down's syndrome, but his healthy 4-year-old daughter Alexandra as well.
A year ago Sonya started learning to draw. Her hands were very weak to hold a pencil. She started with drawing of plain spots, lines and circles. The girl was painstaking, she didn't cry although drawing was a really hard work for her. In four months the girl could draw smooth lines. Now the girl attends a kindergarten for normal children, but Sonya's mother says the girl will be hardly accepted to school, as teachers don't have children hit with Down's syndrome in their classes. But the girl and her mom don't despair.
Tatyana Yesipova says that it is the most serious problem to have children suffering from Down's disease accepted to school. School principals say that children hit with Down's syndrome cannot cope with the school curriculum; they recommend such children to attend special auxiliary classes. Parents of diseased children say that school directors merely don't understand that being among other diseased children a child hit with Down's syndrome won't have any progress in studies at all. It is important that diseased children must see the behavior of normal children and learnt from the example. Experience of several past years reveals that children having an extra chromosome can learn lots of things: speaking, writing and social behavior in the city.
People suffering from Down's disease develop like other normal people but slower. The level of their effective skills and behavior is gradually increasing. Such people even can get married; however this doesn't mean that all people hit with Down's syndrome must live their married life. It is important that at some definite age people suffering from Down's disease may be socially adapted quite well.
Tatyana Yesipova says that almost 90% of people suffering from Down's disease are acyetic. What is more, there are just few of them who actually have sexual relationship. But it is not ruled out that people suffering from the syndrome may have children. Indeed, such people should better not have children, but living together is really very helpful for diseased people. First of all, living together people may become friends for each other which will help them go through problems of everyday social life. Living together is also a strong stimulus for people suffering from Down's disease to enrich their vocabulary and enlarge the range of their interests. Intimate relations between such people are also of highest importance for their life; they develop the personalities and make such people stronger in solution of everyday problems. Some months ago the organization set up by parents of children hit with Down's syndrome issued a booklet describing how parents should bring up their diseased children. They emphasize that patience is the most important thing about upbringing of children suffering from Down's syndrome. Although the life of parents with children suffering from Down's syndrome is really very hard, they still hope that a medicine will be invented to make their children healthy.
For the time being, there is no scientific answer to the question why the extra chromosome causing Down's syndrome appeared. In fact, people suffering from Down's syndrome are very happy: they cannot cause any harm as they do not understand what evil means. Such people remain ingenuous and naпve until the end of the life. People hit with Down’s syndrome live in their particular world, of which other people are not aware.
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