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Young Child Born With Rare Genetic Disease. He's Now 5 Years Old And This Is What He Looks Like

Written by Beatriz Sanchez
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Evan Fasciano was born with a genetic disorder called Harlequin Ichthyosis, which causes babies to be born with thick, hard skin. Due to the fact that he suffers from the severest form of the disease, he’s in constant risk of infection.

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In order to prevent dehydration, seizures and sunstroke, his mother, De De, bathes him twice a day. ‘We’re very strict with Evan’s skin management, 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,’ she said.

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Once bath time is over, De De uses a net to scoop out the excess skin from the water, as they could cause issues to the house plumbing. She then covers her son in Aquaphor in order to keep him moisturized.

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Evan’s condition also prevents him from sweating and his body burns more calories than normal. ‘We’re constantly pushing fluids and food as much as we can just to keep him up on the calorie intake,’ said De De.

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Once bath time is over, De De uses a net to scoop out the excess skin from the water, as they could cause issues to the house plumbing. She then covers her son in Aquaphor in order to keep him moisturized.

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Evan’s condition also prevents him from sweating and his body burns more calories than normal. ‘We’re constantly pushing fluids and food as much as we can just to keep him up on the calorie intake,’ said De De.

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