The medicine by in two livesComes nearer summer, children joyfully frolic in the street: go for a drive on bicycles, play hide-and-seek and dogonjalki … but not all. Brothers Aydar and Dinar see the world basically through a window in the room. Locked up children are held by total absence of immunity. Thank God, boys can be helped.
blue-eyed simpatjaga Dinar Enikeev does not look on the 13 - thin shoulders, an innocent look. In hands at Dinarika - tolstennaja the book “ the Fog of Andromedy “ on a table - a diary, in which continuous “ the five “. Nearby the big brother, 16 - summer Aydar, the guy spends all the day long behind the computer. Here and now it prints something, with concentration looking in the monitor.
- I will arrive in aviation, - Aydar confidently speaks.
teenagers at their age happen often cocky and aggressive, like to send on errands a ball in a court yard and already try to smoke behind garages near school. All it is alien to boys. Almost they have spent all conscious life within the precincts of the room, from the first class being on house training.
is not present, they can move. Has put here in other: at both guys incurable disease - illness of Brutona. Simply speaking, boys absolutely do not have immunity. And any infection, even banal cold, can become for them fatal. And live, being afraid of any casual chiha. And it not to mention that children are not imparted from one illness - to their organisms not under force to process a vaccine. That is dinar and Aydar can die, for example, of a poliomyelitis or a hepatitis. And if they pick up any infection, to stop process it will be impossible.
- the Pneumonia for us is already as a cold, - the father of boys, Ildar sighs. - I Remember, for me in the childhood it always was something terrible, mortally dangerous. And my children are ill it on some times in a year. And each time I think - will survive or not?
Mum “ Has burnt down “ from a cancer
In apartment at Enikeevyh it is silent and cosy. On a pier glass there are the lovely pictures embroidered with colour threads: a little mouse with a pencil and beautiful flowers. Everywhere an ideal order - motes, and even textbooks at children stand so as if only in the morning mum came into a room and ordered to put things in order to madcaps on regiments. But pictures at a mirror were embroidered with Dinar, in the house the father has tidied up, they since early years have got used to store books accurately. And mum Adelina “ has burnt down “ from a cancer in 2006, it is literally for a month. So the third year as Ildar struggles for life of children alone has gone.
- when boys were born, anybody and could not think that they are sick, - remembers Ildar. - to Aydar it was executed three, have sent it in a garden. And suddenly he has started to be ill strongly, the temperature has risen to 38 degrees and did not fall down one and a half month. Long searched for the reason. And at last have found out that it does not have immunity, a genetic pathology. At mladshenkogo - the same.
from this point on all life of Adeliny has turned to care of kids. But, probably, has not sustained parent heart of a constant pain and alarm … And Enikeevy all three at once were deserted.
rescue - “ Oktagam “
Fortunately, it can be helped. Brothers of Enikeevy can and will live, but under one condition: every month they should receive a preparation “ Oktagam “: 200 milliliters for Aydar and 100 - for Dinara. Possibility to live in this world for these children manages in 67 thousand roubles every month. Ildar Nailovich, of course, the slogger, works on UMPO as the senior master in forge shop, to live for its salary three together quite probably, and here to buy such expensive medicines - certainly, no. Till January, 2008 “ Oktagam “ to brothers gave in hospital free of charge, and now according to the federal legislation it is excluded from the list of vital preparations. And under program DLO 417 roubles are allocated for one exempt in a month. With such financing children should save for one dropper about ten years! And it is necessary to them every month.
all free time of Ildar devotes to circulations on instances. On a table the mount of formal replies from the organisations of all levels lies: from Presidential Administration of Russia to Ufa Gorzdrava. Anybody directly does not refuse the help, simply send the letter further or inform, are ready what to help, but “ according to the current legislation “. Well, about 417 roubles we already heard.
- we are, of course, very grateful to our physicians, they nevertheless try to discover in any image for us means though under the law and are not obliged it to do, - Ildar sighs. - Here, for example, we have received 200 milliliters for the first quarter. It is, of course, better, than anything. But such quantity will suffice only on Aydar, and that for a month. So it is necessary to postpone and save ampoule each time.
in February and March, and without having managed to get the necessary dose of a medicine, Ildar held the sons locked up, being afraid, as though they have not picked up any deadly infection. Children have met spring very pale and weak, again having endured a pneumonia. In April of boys “ prokapali “ in Republican children`s hospital, having spent for them a monthly stock “ Oktagama “ which have allocated for all establishment. In April for them have collected the necessary sum of welfare fund “ Our children “: about Enikeevyh already wrote to the mass-media, many have responded and have sent to children who how much can. That with children will be further - anybody does not know. The fund on - former continues fund raising for brothers. The matter is that to buy a medicine independently Enikeevy not can - in our republic on free sale it simply is not present. And “ our children “ Have managed to come into contact to the necessary drugstores in Moscow and reserve a preparation specially for Dinara and Aydar.
- It would be desirable to hold on at least till that time when officials will understand with laws and my children will receive, by the way, registered in the Constitution, the right to life and free medical aid … - a voice at Ildara breaks, but it there and then takes itself(himself) in hands, who if not it, has to be strong in this house? But it is not necessary to be very acute person to guess that this night, as always, Ildar Nailovich will wake up from children`s cough behind a wall and to dream that when - nibud this nightmare in which they should live, all - taki will end …
Dear readers! If you want to help to survive to these children, be converted into edition: Ufa, street Parhomenko, 156/ 3, 6 floor. Ph. (347) 292 - 44 - 47.
it is possible to list Money on a special bill:
r/ with 40703810700001000107 in Branch “ My Bank. Mortgage “ (Open Society) in Ufa
to/ with 30101810100000000904, BIK 048071904
an INN 0278134021, a check point 027801001
In the column “ the Addressee “ necessarily specify NBF “ Our children “ and in the column “ the Payment function “ - “ Charitable offering for Aydar and Dinara Enikeevyh “.
the Detail information about boys can be learnt by phone: 8-901-440-31-25 (deputy director NBF “ Our children “ Gulnara Aliev) or on a site www. nashideti. org.