Five-year-old Evan Fasciano is battling an agonising and potentially lethal condition that causes his skin to grow at ten times the normal rate which leaves him with scales across his entire body.
Suffering from the severest form of the disease, Evan is at constant risk of infection - requiring him to have two baths a day so his 33-year-old mother De De can scrub off the scales.
She said: 'We're very strict with Evan's skin management, so we try to keep him scale-free, and because of that his scales tend to be very thin, so they're easier to get off.
'If we didn't bathe him twice a day then the scales would get much thicker, much faster and it would be harder to get off. I can use my hands to remove most of it and then we'll use a wash cloth or exfoliating cloth - his hands and his scalp are the thickest so that's where it takes a little bit more effort.' Sad. See more photos below...
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