Two little fighters: brothers battling butterfly disease in rural Iran
Emad and Iman live with epidermolysis bullosa, also known as butterfly disease, a rare condition that causes exceptionally fragile, blistering skin.
In a remote village tucked away in Sistan and Baluchestan - where clean water is scarce and healthcare is distant - I met two young brothers, Emad and Iman, just three and four years old, whose quiet strength left an unforgettable mark on my heart.
Their father, Najibollah, had carried them for hours to the nearest health post, each boy resting silently in his arms. Despite their tender age, their faces bore expressions of pain far beyond their years, marked by open, infected wounds caused by Epidermolysis Bullosa - known as Butterfly Disease. Their skin, as delicate as a butterfly’s wing, blisters and tears at the slightest touch. On that day, the signs were unmistakable: painful lesions on their faces, legs, and hands, raw and vulnerable.
Their father sat quietly, the weight of worry etched deeply into his face. Though he said little, his expression spoke volumes: “I don’t know what will happen to them.” He had come seeking help, fully aware that in this region, access to specialized care and life-saving wound dressings is nearly nonexistent.
Najibollah says: “We receive good medical support at this centre, and my children are examined regularly. We have enough bandages for their wounds. However, we lack sufficient emollients for their ongoing care.” In 2020 and 2022, UNICEF facilitated the procurement of specialized bandages for children living with Epidermolysis bullosa in Iran, providing essential care for families like Najibollah's.
Without proper supplies - especially silicone-based bandages that can ease pain, prevent infection, and support healing - these boys face a future filled with uncertainty. The lack of clean water and poor hygiene conditions in their village only make their situation more precarious.
And yet, in the stillness of that small clinic, I saw something extraordinary. The brothers leaned against each other, sharing a bottle of water, gently comforting one another. There was resilience in their quiet gestures - a bond not only of blood but of courage forged through shared pain.
Their only hope lies in the health post supported by UNICEF, where they can access comprehensive care, free of charge. It is a small haven in a landscape of challenges.
Their story is just one of thousands - but it is no less urgent. These children need our attention, our compassion, and our action. Their future depends on it.
