Sasha has a tuberous sclerosis, a rare genetic multisystem genetic disease that causes non-cancerous tumours to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs, and skin. Characteristic tumors in the cerebral cortex, tuberses, have caused severe epileptic seizures, which the girl has been suffering since she was 3 months. During the treatment there were several short periods of remission, but the seizures returned.
The therapy carried out did not bring results.
Today, neurological problems lead to developmental delay, mental retardation, muscular weakness and other neurological and psychiatric problems. The whole body is suffering from desease. The treatment is aimed at preventing the development and spread of tuberses. By the decision of the republican consultation, the girl is recommended to treat the expensive drug Everolimus for a long time. The annual course of treatment requires 13 packs of the drug.
Dear friends, Sasha dreams of being healthy, living without seizures and pain, going to school, making friends and growing up! Thank you for your help!