28 June 2018
Nikita is a brave boy, but still he is deeply depressed by his diagnosis. He has two elder brothers. One of them is a grown-up already; he has entered a university and even works as a traffic warden. The second brother is an upper-form pupil; Nikita — who is to go to school this year — is very curious about the brother's ‘adult' school life of a teenager. In 25% of cases if both parents are carriers of the ‘damaged' gene, a baby suffering from cystic fibrosis is born. Nikita was unlucky to belong to this quarter, and thus his life will never look like that of his brothers'. In fact, it is already quite different from the way of life that healthy children normally lead.
Two or three times a year Nikita has to stay at hospital — either to prevent infections, or — more often than not — to relief aggravation. He cannot do without a lot of medicines; however, the boy is not provided by the state with some of them; moreover, he does not get enough of other drugs, since the local budget cannot afford it. His lungs easily get contaminated with the infections that are not dangerous for healthy people but may become terminal for the patients with cystic fibrosis, because viscous phlegm accumulates in their lungs and they cannot hawk it up properly. Hence, Nikita realises he will not be able to study, make friends, communicate and simply live like his brothers do — lots of threats surround the boy and he always must be alert and cautious. An ordinary life is unattainable for him — and thus is more desirable. But the boy is very well aware of the price for his health, hundreds of thousands of roubles a year. He knows as well that his parents cannot earn that much money.
Nikita did not attend kindergarden and will not be able to go to school; though he is eager to communicate with other children and would be happy to make friends with them, he is supposed to receive home education. Only a few years ago the disease from which he suffers was considered to be fatal, but modern medicine is developing actively and now patients with cystic fibrosis are no longer doomed to die; they can live a long and full life without being under lock and key, detached from the rest of world in order to prevent deterioration of the disease. The only condition is to provide such patients with the required medicines, the result of advanced medical technologies. Currently the boy has to be treated with ‘Colistin' to combat dangerous bacteria in his lungs. Such bacteria are widely spread everywhere — one cannot avoid them or protect oneself from them; but they can be beaten medically. Nikita's parents managed to buy a small amount of the medicine on their own, but it is far from being enough. The family cannot cope with this problem without your help. We beg you to assist in buying ‘Colistin' at a cost of RUB 285 600.