Epidermolysis Bullosa (EB) is a rare inherited connective tissue disorder that affects 1 child out of every 20.000 births. It seriously affects skin, internal organs and bodily systems. It is incurable, but proper medical care may significantly reduce the risks of complications and prolong the life of those, suffering from EB. This project aims to support 12 children in Belarus with severe form of the disease to purchase necessary lifesaving medical supplies.
Children with EB are known as Butterfly Children because their skin is as fragile as the wings of a butterfly. Blisters appear in areas of slight friction, pressure, an increase of body temperature, environment. Every day these vulnerable children face a painful battle against blister formation and the risk of infections due to open wounds. State assistance provided to these children is insufficient to cover all the costs of specific bandages and medicines required on the regular basis.
This project aims to support the families with children suffering from severe form of EB and supply the lacking high cost lifesaving medical supplies that will minimize the risk of infections, serious complications and ensure the improvement of quality of life.
The adequate medical care cannot only reduce the risk of infections, serious complications, and development of malignant diseases that will certainly increase the life expectancy of people suffering from EB; but it also gives them the opportunity to turn hostile environment and daily activities into something they can painlessly enjoy. Gentle life requires special care.