undiagnosed ailment

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The image that you see here is that of a 4 year old child whose face is now completely disfigured due to some undiagnosed ailment. She had developed a small projection on her lower lip which was attended to but it spread all over her face as can be seen in the image. This was spotted last year and countless specialists have been consulted but no one can diagnose it. Cancer and bone tumour has been ruled out. What could this kid be suffering from?