Tamerlan is 6 years old. Immediately after birth, he was admitted to the intensive care unit on an IВЛ, where his struggle for life began. Doctors diagnosed him with severe brain damage and epilepsy.
He still cannot sit, speak, or lie still due to painful convulsions and spasms. He has pharmacoresistant epilepsy that cannot be treated with conventional medications.
In 2025, Tamerlan was fitted with a baclofen pump, a special device that delivers medication directly to the spinal cord to reduce spasms. There have been improvements! The boy is feeling better, and the family now spends more time going for walks with him.
Tamerlan understands and feels a lot, and he loves being around his loved ones and watching what's happening.
The parents are not giving up and continue with the examinations, rehabilitation and search for treatment. Tamerlane now needs to undergo regular video-EEG monitoring to monitor pathological brain activity.
A recent "exome sequencing" analysis did not provide an accurate answer about the cause of the disease. Therefore, doctors recommend an in-depth genetic study to accurately determine the cause of the disease and understand whether it is hereditary and to select the optimal therapy.
