We have a common family: my husband, our long-awaited son Maxim and I. When our baby was born, he weighted 3 kilos and seemed to be a healthy child according to all parameters. We spent a week at maternity hospital; Maxim had no appetite, had no strength, slept a lot, hardly ever cried and could not digest food; and, the worst of all, he could not defecate. My complaints seemed to be ignored; we have almost been discharged from hospital. But on that day the baby began vomiting bail. I tore to pieces the discharging documents and said: «Do whatever you want, but I won’t leave the hospital.»
We were moved from one hospital to another, since no one understood what was wrong and what to do. Maxim underwent an operation, but it did not produce the desired effect; on the contrary, Maxim had to take life-sustaining treatment for a month. I could visit him only twice and only for five minutes. I do remember my every tear and every day I spent without him. The doctors could not guarantee that my son would survive, as he was too weak. Finally, my husband decided he could not stand it any more and contacted Russian Children’s Clinical Hospital. He wrote a letter of enquiry, and in a week we went to Moscow.
After numerous check-ups had been given, the diagnosis was established — Congenital aganglionic megacolon, which means that the large intestine does not function properly. Some more operations have been performed; the large intestine and a part of the ileum. During the period after the operation it became clear that the child is not able to put on weight when he gets nutrition in a common way. That is why he has to get parental nutrition in addition to common food for several years. We need RUB 150 000 each month to spend on medicine. In other parents’ experience I know that the children suffering from this illness do have a quota on medicine and special nutrition from the state. However, we have to g to court to make officials respond on my demands.
My husband has no job now, and I am on maternity leave. So, unfortunately, we cannot cope with the financial problems. We used to raise the money for the medicine, but we do not manage with it any longer. Meanwhile, our boy cannot wait any longer. Though Maxim is 10 months already, his weight is only 7,5 kilos. The state of affairs is not that bad, as he does not lose weight, at least. Our son has being given intravenous therapy for twenty hours a day. He eats like common children do, but only specific kinds of food are allowed. They are some sorts of cereals, special nutrition and a pair of types of mashed vegetables and meat. His menu does not seem to be very varied, does it? But Maxim got used to it, and he likes these dishes. Please, we beg you to help us and supply Maxim with all the necessary things for at least two month, until the state starts supporting our family. The children with Congenital aganglionic megacolon have a good chance to survive, and we hate the very idea to miss it.