One of the merciless conditions that start shortly after birth is epidermolysis bullosa. The disease weakens the skin so much that any touch can cause painful wounds, which are very difficult to heal. Little ones with such a condition are also called “butterfly children”.

Alex was born with such a disease, a condition that makes his skin extremely sensitive, and any touch, no matter how small, can cause open wounds with terrible pain. Internal injuries can affect his larynx and oral mucosa. The treatment can relieve the pain, stinging and itching, but it does not cure it. His mother, Nicoleta, hopes that one day a cure for this condition will be discovered. Until then, she dedicates herself 100% to him and does everything possible to make the little boy’s life as beautiful as possible together with her husband.

My mother thought she wasn’t going to survive

Alex’s mother told us that she found out about her child’s illness immediately after giving birth. “They told me that Alex had a problem: he was born without skin on his right leg, from the knee down and on his hands. Luck made it so that I had to perform a cesarean section because I don’t want to imagine how much skin he would have had in normal birth”, the boy’s mother told us. The child was transferred to the “Grigore Alexandrescu” children’s hospital in the capital, where there is also a plastic surgery department. The doctors gave them the hardest blow. “They won’t survive, let’s not get our hopes up, there have been other cases when they were hospitalized for up to 6 months,” recalls Nicoleta.

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Bandaging takes an hour

In the beginning, it took up to 3 hours to change the bandages, but that was not a problem. The bandages still fall off as Alex scratches himself, but nothing makes parents more grateful to spend another day with their beloved child. In the meantime, the changing technique has improved and I still lose about an hour of the day to diapering. This way, Nicoleta and her angel have more time to play. He knows that in the future it will be more difficult for him because he will not be able to feed himself if he has injuries in his mouth and esophagus.

Why does epidermolysis bullosa occur?

The disease is caused by a genetic mutation. The signs of the condition are observed shortly after birth. Manifestations vary from child to child, from mild forms with the appearance of lesions mainly on hands, feet, knees, and elbows, to those with vesicular eruptions on large surfaces, including mucous membranes.

Epidermolysis bullosa can have serious complications because it can affect joints, teeth, eyes, and nails and even cause limb malformations. Because they cannot feed themselves properly, they end up with serious protein, vitamin, and mineral deficiencies.