The Butterfly in Pain

Mylana has a rare genetic condition called epidermolysis bullosa. Her skin is so delicate that even the slightest touch can cause painful blisters, which then turn into open wounds. Children with this diagnosis are often called "butterfly children" because their skin is as fragile and delicate as a butterfly’s wings.

Every day is a real challenge for Mylana. What seems like everyday routines for others – getting dressed, having breakfast, taking a few steps – can become a source of pain for her. Constant bandages, dressings, and healing ointments are a regular part of her life.

Mylana spends most of her time at home. She can only go for walks when the weather is cool, as heat worsens her condition. She fills her days watching cartoons or making diamond mosaic pictures – slowly and carefully, using both hands to avoid new wounds.

At 15 years old, Mylana weighs just 17 kilograms. She suffers from chronic anemia and severe protein deficiency. To maintain her strength and give her body a chance to recover, she needs special high-calorie nutrition: Nutridrink protein yogurts and Nestlé Nutren Optimum porridge. She also needs healing creams and ointments every day to help her skin recover.

Our goal is to raise funds to cover Mylana’s special nutrition for four months. This will give her the strength and energy she needs to keep going.

Please support Mylana!