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Imagine ter bolhas e feridas todos os dias. Imagine sentir dor ao segurar um lápis ou encostar numa colher. Essa é a realidade cruel de uma criança com epidermólise bolhosa, uma das doenças raras mais dolorosas que existem. A pele dessas crianças é extremamente frágil — qualquer atrito pode abrir feridas profundas. Por isso, vivem enfaixadas, longe do toque, da brincadeira, do carinho espontâneo. Mas isso não deveria ser assim. Famílias inteiras lutam junto. Fraldas, pomadas, gazes especiais,
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