Apalinaryia Manilenka

Diagnosis of the child

epilepsy (Dravet syndrome)

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. This disorder is genetic in nature (the SCN1A gene). The treatment prescribed for this disease is aimed at reducing symptoms and their negative impact on the body and quality of life of the patient; there is no surgical treatment. The drug Stiripentol is an orphan drug (aimed at treating a rare disease), it is registered in the USA, the European Union, Israel and other countries, and is the first choice drug for Dravet syndrome.

The purpose of the collection

Purchasing medicinal product Stiripentol (for a two-year course of treatment)

History of the child

Apolinaria was born an outwardly healthy child without any pathologies, but at 10.5 months, against the background of a high temperature, the baby had her first seizure. For the next 3 years of Polina’s life, all viral and bacterial diseases were accompanied by convulsions, and from the fourth year of life, convulsions began to occur regardless of her state of health and body temperature. And every month the number and duration of attacks increased.
Polina underwent repeated examinations at the Republican Scientific and Practical Center “Mother and Child” in Minsk and the Brest Regional Children’s Hospital, and was observed on an outpatient basis by various neurologists, but taking medications prescribed by doctors did not help, and the seizures progressed. By the age of 6, the number of seizures reached from 20 to 30 per night 3-4 times a week. Against the background of frequent seizures and a long recovery period after them, Apolinaria’s speech noticeably deteriorated, hand tremors appeared, and cognitive activity and learning ability decreased. Now the girl is homeschooled.