20 April 2018
It is horrifying when while describing present illness the doctor who is supposed to consult a six-month-old baby suffering from bilateral pneumonia asks the parents what Cystic fibrosis is. Cystic fibrosis is one of the most widely spread genetic disease, which is characterised by hampering the functioning of all internal organs. New-born babies undergo the test for this disease in the first days of their lives being at the maternity clinic. However, not all doctors, especially those in small provincial towns, are aware of this disease, let alone of the ways to treat it. That is why Sonya's parents have decided to take a mortgage and move to a larger city — in order to be closer to qualified doctors. They thought they would better lose all their money than they would lose their child.
At that time Sonya's parents could not know that they had got into a trap: in a few years the girl's lungs got damaged, since they were weakened by the disease and were filled with phlegm which could not be hawked up properly. Doctors recommended that the girl should start taking ‘Colistin' as soon as possible, for it is almost the only antibiotic to treat cystic fibrosis. The required amount of the drug will cost RUB 190 000. Even the families where both parents have a stable job and have no debts to be paid would find it difficult to collect such a sum. As for Sonya's family, only her father has a permanent job, while her mother works as a freelancer to earn some more money for the family. The thing is, it is difficult to find a job for the woman who has to be on a sick leave very often to take care of her sick child.
For Sonya the name of the medicine sounds like a magic spell — ‘Colistin'; she believes that if she pronounced the word for many times, the disease and hospitals would be left behind, she would come back to school and meet with her classmates and teachers. Sonya is a very active girl, and she likes studying. If she were allowed to attend all the clubs and societies at her school, she would surely do so. She is keen on painting, as well as dancing and singing. She is sociable, curious and very energetic by nature; thus, she cannot put up with the idea that the range of possibilities allowed her is limited, while that of other children is much wider. Still, certainly, she understands everything. Nevertheless, for the time being, the absence of the medicine means to her the lacking in abilities.
The parents see the problem the other way round: for them the absence of the drug is a real danger to lose someone they love tenderly. For them the name ‘Colistin' is not a magic spell but a rescue, which — unfortunately — they cannot afford. Whether they uttered this name for dozens of times or not, their girl would not get better due to this. There is no chance that they could manage to find RUB 190 000; meanwhile, the treatment to the girl should have been given much earlier, namely, as soon as the results of the test had revealed the infection in the lungs. Though the damage that had already been caused to the girl's organism cannot be repaired, we can prevent deterioration. We beg you to give Sonya a helping hand.