For young Janet Adilkhanova, every day is associated with overcoming difficulties: she is a butterfly girl. Such an innocent definition is given to people with epidermolysis bullosa - a rare, poorly studied and incurable disease today.
The skin of “butterflies” is too fragile and does not protect them from the outside world - any careless movement, even touching, can result in serious injury. First, blisters will swell on the skin, and then they will turn into non-healing wounds.
Therefore, Janet needs constant dressings - and ordinary bandages will not work, they must be soft and breathable so as not to injure delicate skin. And special protective and restorative creams and ointments are also required - thanks to all this, a kind of protective cocoon grows around the skin, which, on the one hand, preserves the integrity of the organ, and on the other, allows the girl to lead a more active lifestyle.
Janet is in seventh grade and loves to walk and help her mother cook - activities that are much more risky for her than for her peers. The Butterfly Children Foundation is launching a fundraiser - thanks to your help, she will be able to escape from illness and pain and devote herself to the ordinary life of a teenager.
