11-year-old Egor lives with a rare diagnosis - Netherton syndrome. This is a severe form of ichthyosis, an orphan (rare) genetic disease in which the barrier functions of the skin are disrupted: it does not retain moisture, easily inflames, flakes, becomes vulnerable to infections and susceptible to systemic allergic reactions.
Egor was born in a collodion membrane, a thick film similar to cellophane. This is an important symptom for the diagnosis of ichthyosis, the collodion membrane cannot be removed – it exfoliates itself within a few weeks, but the doctors at the hospital did not know this. The doctors removed the membrane, and a hospital epic began in Egor's life. It soon became clear: this is not a temporary condition, but a diagnosis that you will have to learn to live with. In the early years, the family was observed in various clinics, choosing care, funds, and therapy. It has been a long and difficult journey.
Today, Egor is growing up as an ordinary boy - he goes to school, communicates, asks questions, learns to accept his appearance and live with the peculiarities of his condition, because his skin requires daily multi-stage care.
This is not cosmetics or "comfort", but a vital necessity - an "external barrier" that compensates for the lost functions of the skin. Egor needs to regularly use special cleansing, moisturizing, regenerating and protective creams and ointments, and the Butterfly Children Foundation opens a collection so that the boy has everything he needs. So that the companions of his childhood life were not pain and itching, but care and support.
Verified by Tooba
Verified by Tooba
