Fight without strength but not surrender without a fight

Sergii is a very long-awaited child, for a long 10 years it did not work out to get pregnant, although the family already has an eldest daughter. Sergii was born as a healthy baby on a clearly set date with a weight of 4400, development proceeded according to age, no deviations were observed. There was no limit to happiness in the family. But... life decided differently

At 6 months the child stopped responding to others, all emotions disappeared. No new skills were acquired. The child slept 18 hours a day and looked at one point. Running around all possible doctors in Kharkiv did not give any results. No one dared to diagnose and prescribe treatment.

A month later, the boy had the first attack of infantile spasms, these are serial attacks. A week later, the next attack. Neuropathologists prescribed treatment with Ukrainian drugs, nootropics, from which, within two weeks of taking, attacks became daily. During the next month, the child had 6-8 series of seizures a day, each up to 94 folds of the body. Lactate (lactic acid) was increased 3 times from the norm. This means that the child's whole body ached inconceivably from the epileptic seizures.

According to the results of multiple examinations in private clinics in Kiev and Bila Tserkva, the diagnosis was made: "Severe epileptic encepholopathy, West syndrome, secondary metachondrial dysfunction, developmental delay", and later, during the examination, a heart defect was revealed that requires surgical intervention in the near future.

The selection of anticonvulsants was carried out for four months, nothing brought results. The attacks grew, which already provoked a complete cessation of development. The worst thing is to feel like an adult, completely helpless, next to a small lump that suffers from pain, whose eyes are full of tears, he looks at you, hoping that you will help, and you can only hug... hands and did not give any chance, not that for a full life, but for life in general.

The doctors of the Kiev clinic decided to undergo urgent, complex hormonal therapy, a drug which was almost impossible to get during the pandemic. Sergii underwent a six-month course of the hormone Sinakten-Depot, and he has more than 40 injections in the course. Has suffered terrible side effects of this drug. I gained a lot of weight, the body was covered with hair, the child was bent like a string, the pressure was very high, the glucose in the blood was much higher than normal. It was torment not only for Sergii, but also for his parents. But it was worth it. The attacks receded.

To date, the child on anticonvulsant drugs, which are not available in Ukraine, underwent a course of hormone therapy, lasting 6 months. Active work on rehabilitation began. All the skills that a healthy child must acquire on his own, Serezha needs to be taught. These are the skills of self-service, understanding of addressed speech, pointing gesture, feeling of oneself in space, and much more. This requires daily training with specialists.

Also, the cause of such a rare disease of the child has not yet been identified. Numerous tests and examinations have been completed. Nothing has been identified. An expensive gene analysis was scheduled. Based on the results of this analysis, it will be possible to choose the most effective therapy for treating the baby in order to bring his life as close as possible to a full one.

Therefore, this family really needs our help, because together we are strong!