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Butterfly kids.
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25 мар 2022Butterfly kids. Who are they? This endearing name stands for children who suffer from a rare genetic disease, epidermolysis bullosa. It’s a disorder that makes the skin delicate and fragile, like a butterfly's wing, and a single careless touch may cause painful lesions and blisters. Approximately 1 in 50,000 newborns is affected, thus, simple arithmetic tells us that there are several thousand butterfly kids in Russia. Unfortunately, no special conditions are available for them in our country, which makes many parents simply incapable of helping their children. Online polls show that most people have never heard about butterfly kids – and many doctors haven’t either. B.E.L.A. Butterfly Children, the only foundation that deals with this problem in Russia, was only created in 2011. The team at my Growing Up Together foundation https://instagram.com/fond_vzrosleemvmeste and I want to make a difference, and our new podcast will provide detailed information about these special babies and the ways to help them.
#nareksirakanyan #charity #children #epidermolysisbullosa #butterflychildren
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