Oisha is one and a half years old, but she doesn’t walk or crawl — not because she doesn’t know how, but because every movement causes her pain. The girl has a severe form of epidermolysis bullosa — a rare genetic disease in which the skin is damaged by any careless touch.
“The pregnancy went well, the ultrasounds were normal. When Oisha was born, there were two red spots on her face. The baby was sent from the maternity hospital to a hospital, where the number of wounds increased.” The doctor diagnosed her with “bullous epidermolysis,” says Oisha’s aunt, Madina. “Right there, in the hospital, they gave us the contacts of the Butterfly Children Foundation, which provides us with dressings and care products.”
But the fragile skin, which requires daily dressings, is not the only problem the family is facing. With bullous epidermolysis, the body constantly loses proteins, iron, and other important elements.
“Oisha is growing well, but she’s not gaining weight well.” In addition to formula, Mom feeds Oisha puree, but she eats little and reluctantly; there are also many wounds in her mouth and on her mucous membranes, which make it not only painful for her to eat but also difficult for her to breathe. The doctors said that additional nutrition is needed,” says Madina.
We are launching a fundraising campaign to purchase special therapeutic food for Oisha, which will compensate for the lack of nutrients and provide her with the energy needed for full development.
