16 December 2013
Arsenty is the fifth baby in the Grishchenko’s family. The older boy is a grown-up already, he has his own family and kids. Three children died in a very young age — the doctors were talking about unknown disease, the neighbors were whispering about bad fortune and spell, the parents were taking uncountable tests to find out what was wrong with them. Arsenty’s birth brought happiness to the whole family and recovered the mystery of a «bad fortune»: the parents have a slight change in one gene, which can be a cause of a severe genetic disease with their children, of a cystic fibrosis, at a 25% probability. The untimely diagnostics of this disease took away the lives of their three babies.
Today cystic fibrosis does not look that fearful. The doctors unanimously used to name it as a fatal disease, whereas now we are talking about a life-shortening disease. They have developed new drugs that if not eradicate the cause of the disease but definitely conquer its consequences, such as destruction of the lung tissue, gastrointestinal and endocrine disorders. But though these drugs exist does not mean that they are affordable for Arsenty: a number of drugs are not on the subsidy lists and the government does not pay for them. The reply to all requests to the regional public health department was «that the child can be provided with the drugs during hospitalization». Arsenty needs Colistin, it is administered through inhalation, one course is three months. You can’t but agree that it makes no sense to stay in hospital for several months with the purpose to do a 10-minute inhalation twice a day, especially if you are 9 years old, and you have school, friends and a lot of other interests in life. Moreover, it is doubtful that the Public health ministry will give a квоту fir such a long treatment in hospital.
From his mother’s letter:
We are not rich, only my husband has job, but his salary is only enough to pay for the utility bills and for food. If not for the son’s disease we would manage everything ourselves, but the prices for the drugs are
too high for us. Arsenty is our joy, he is cheerful, very energetic, and he is a big fantasy maker. I want my
son to be happy. I want the disease not to restrict his abilities, but to foster his character and teach him to overcome himself and all obstacles on his way. Please help us to cure Arsenty, we do not have money to pay for his life-saving drugs.