Brave Marko (5) Is a "Butterfly Child"; Daily Wound Care Costs $200

Five-year-old Marko was born with one of the most severe genetic diseases. 

Children affected by this condition are called "butterfly children" because their skin is extremely fragile, and even the slightest touch can cause wounds.

For Marko's parents, this was not just a disease they had never heard of before, but a complete life change from the very beginning. From day one, their lives have been measured by time spent on care, bandaging, and a constant battle with pain.

Foto: Newsmax Balkans/Nemanja Lukić

"You're in shock when you first hear about the disease, and in the end, you realize it's one of the most severe diseases that exist. Our everyday life is extremely difficult and painful. Every day we spend about two to three hours changing bandages. The pain our child endures is unbelievable. He is very brave, but it's incredibly hard because the disease is ultimately incurable," Marko's mother, Marija Radivojsa, told Newsmax Balkans.

Although there is no cure for this disease, there is a therapy that represents great hope for the Radivojsa family. It does not cure the illness, but it can reduce chronic wounds which, over time, may lead to the development of aggressive skin cancer.

For them, this is not a matter of choice, but the only chance for Marko to live longer and with a better quality of life.

Daily bandaging costs $200

Marko's mother pointed out that the cost of the therapy for six months amounts to $650,000, and that over three quarters of a year, 62 percent of the necessary funds have been raised through the "Budi human" ("Be Human") campaign.

As she explained, the therapy has been available for about a year and a half and was recently approved in Europe.

Foto: Newsmax Balkans/Nemanja Lukić

She added that so far eight children have received this therapy.

"We hope that Marko will be one of them, if the state decides to continue financing the therapy. A single day of bandaging costs about 20,000 dinars (around $200). However, from the state we receive 60 sheets of special medical dressings every three months. He needs 180 over the same period, so there is a shortfall," said Marija Radivojsa.

Marko is one of only 39 patients in Serbia living with this diagnosis. So far, only eight have received the therapy that can slow complications and prolong life.

The others are still waiting - for decisions, funding, and time, which carries particular weight with this disease.

State support, parents say, does exist. But life with a rare disease is not just about therapy, systemic solutions are needed.

"He's a very positive boy, and that's a big plus. He's gotten used to it; it hurts, but he endures," the mother of the "butterfly boy" concluded.

While decisions are being made at the systemic level, Marko's struggle remains a daily one.

Far from commissions and budget lines, his days are still measured by the strength to endure pain and keep going.

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