Babies with epidermolysis bullosa (EB) are often called "butterfly babies" because their skin is as fragile as butterfly wings. Our little Bo arrived in September with what looked like a severe burn on one of his legs. Knowing that such a burn was not typical of tiny babies, and having experience with EB in the past, we immediately suspected he might have that diagnosis. Specialists at a the international hospital confirmed our suspicions and we began treatment at our Beijing Home. Baby Bo is fortunate that his type of EB is a rare, less severe form of the disease and is generally confined to just one leg. He does blister easily on other areas of his body, but not nearly as severely as this disease often manifests with other children. It is not curable or treatable, except for dressing the wounds as they occur and preventing infection while they heal.
He was a very tiny 5 lb infant when he arrived, but he certainly doesn't look like a "butterfly baby" anymore... actually, he's starting to resemble a little sumo wrestler! He has the most beautiful little face, don't you think?
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