"Rustam is 16 years old. The boy has a severe form of epidermolysis bullosa (butterfly children). He was born with damaged skin. His whole body was like one solid wound. Rustam is the first and long-awaited child in the family. From birth, he lives with an extremely complex and, to unfortunately, an incurable genetic disease: a dystrophic form of epidermolysis bullosa, the whole body of the boy is covered with painful wounds, fingers and toes are fused, his tongue is half grown to the sky.
There is a way to protect a fragile butterfly. For this, special plasters, soft bandages and ointments for treating wounds are needed that do not stick to wounds. But they are very expensive.
Every month, the family spends more than 2 thousand euros to treat the boy. And this is the very minimum, since the complexity of the disease requires large funds for treatment. In addition, twice a year he needs to go to the hospital and at least once a year to go to a sanatorium.
I learned about the boy two months ago. When I first talked with his mother, she cried into the phone and did not believe that they were interesting to someone, and someone was ready to help them. Such a child needs constant monitoring by a dermatologist and pediatrician to adequately treat wounds, identify and correct complications. And mother was so desperate for the lack of help that she almost stopped going to the doctors.
According to her, in addition to multiple blisters and wounds on the skin (skin lesions of about 60%), the child has damage to the mucous membranes, especially the mouth, by multiple erosions and significant damage to the teeth, which complicates food intake and leads to developmental delays, complete fusion of fingers on arms and legs, so he needs the constant presence of one of the parents.
Permanent loss of protein and other nutrients through blisters and wounds, accompanied by constant polydeficiency anemia, low levels of zinc, vitamin D and Ca in the blood. Such a boy needs adequate skin care in the form of non-sticking dressings, wound healing and antiseptic creams and ointments, constant treatment of the oral mucosa, proper care and timely dental treatment, constant intake of zinc, iron and other nutrients, high-calorie medicinal mixtures with high protein under the close supervision of a dermatologist and pediatrician to improve his condition and quality of life.