Date of birth: September 30, 2020. Diagnosis – bullous epidermolysis, dystrophic form
The story of the new Chepyga family, as usual, began joyfully. There were many positive emotions, dreams and plans. Young parents were waiting for the birth of their daughter Nadiya. September 30, 2020 is the happiest day for Chepygas in their lives, although young parents understood from the first days that their baby was special.
Immediately after giving birth, little Nadiya was hospitalized for pediatric intensive care. The parents were told that the child had skin problems. Numerous medical examinations have established a genetic disease – bullous epidermolysis. This disease occurs due to a “breakdown” of the gene and occurs once in 50 000 cases. Nadiya's skin is extremely delicate and sensitive, injured by any mechanical action on it.
Such children are called “butterflies”. Usual medications and dressings are aggressive to the skin of such children. About UAH 200 000 per month are needed for the treatment of “butterflies”. Part of the treatment is provided by the state, the rest of the costs are the personal problem of the parents.
In addition to expensive medicines and bandages, Nadiya needs special medical nutrition. Its consumption improves the child's skin, as it saturates the body with protein, which is constantly lost through wounds on the girl's body. Genetic tests and specialist consultations in Austria are necessary to diagnose correctly the disease.
The girl's parents are the average Ukrainian young family, which is unable to cope with the problem of their child, which needs daily special care and special medical nutrition. Nadiya needs to take a functional Nutricia Infatrini diet, which can partially relieve the girl from excruciating pain. If it is not used in the daily diet, the wounds on the small body will open more often and at any time. The price of the monthly norm of medical nutrition is UAH 9,000.00.
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