Wednesday, 8 June 2016

Little boy covered in scales must have them scraped off his body twice a day to save his life

A five-year-old boy is battling an agonising and potentially lethal condition that causes his skin to grow at ten times the normal rate.
Evan Fasciano, from Goshen, Connecticut, was born with Harlequin Ichthyosis, a genetic disorder that 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.'
And once his bath is done, Mrs Fasciano has to use a net to scoop out the large volume of excess skin because of concerns that the skin and Aquaphor ointment residue could cause issues to the house plumbing.
After bath time, either she or her husband Joe covers Evan in Aquaphor to moisturise and protect his skin from getting too dry, with a second prescription emollient used for areas of particular concern.

Mrs Fasciano said: 'He needs to be coated with an emollient to keep his skin moist and protect it from cracking or ripping. 



When Evan was born his skin was so thick he couldn't open his eyes for the first two weeks. He spent two months in newborn ICU

'He's usually very giggly and happy when he gets Aquaphor.'
Because his skin dries out so quickly, Evan is also constantly at risk of dehydration, which can potentially cause seizures and sunstroke.
His mother said: 'Overheating is a very scary health complication. He can't sweat so he can overheat very easily.
'We're constantly pushing fluids and food as much as we can just to keep him up on the calorie intake.'


Daily Mail
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