What life with "butterfly child" looks like: "Disease was diagnosed with delay" VIDEO
12 year old butterfly boy from Bajina Basta had lost the battle with incurable skin disease called Epidermolysis bullosa (EB)Source: B92
Those born with Epidermolysis Bullosa are often called “Butterfly children” because their skin is as fragile as the wings of a butterfly. In Serbia, 35 people suffer from this serious disease. What kind of anguish the patients and their loved ones are going through, what is the feeling of a mother who cannot help or hug her child, what medicines can ease suffering and how much the state helps them, those are some of the issues discussed with Snezana Janosevic, from the Association "Debra" within the morning program of Prva TV.
"It is evident from birth, because it is a hereditary disease, but not a direct hereditary one. So, it is not manifested in the family, but represents a combination of the genes of a man and a woman who have the same mutation on the same gene, or a different mutation that causes the disease. There are 25 types of this disease", she said.
She also says that prenatal diagnostics that would indicate this disease cannot be performed because "you have no reason to suspect that your baby will be born with it."
The parents got aware of it at the birth of the child.
"When my son was born, they told me they didn't know what was wrong with him. When they told you that in 2008... They hadn't recognized it right away. He didn't have skin on his left calf muscle, as well as on his cheek and a few other places on his body", Janosevic said, whose 11-year-old son suffers from Epidermolysis bullosa.
She says that, unfortunately, currently there is no cure for this disease.