First of all, this is real. Well, it’s an illustration of a real disorder called Harlequin Ichthyosis. It’s essentially dry skin but it also affects the development of the eyes, mouth, nose, and limbs.

This video creeped me out. I could feel this thing peering deep into my soul and terrorizing me from the inside out. I cannot imagine a birth defect as horrible as this. According to wikipedia most babies borth with Harlequin Ichthyosis die within hours or days, but occasionally one will make it to adulthood.

Meet Ryan González, once a harlequin baby Ryan has become a harlequin man and triathlete. He has to apply lotion to his entire body up to 7 times a day and eats a large amount of food to compensate for all the skin he sheds.

Ryan isn’t the only one; a girl named Lucy from somewhere in Europe has also survived Harlequin Ichthyosis into adulthood. DNA samples and heavy research into the disorder has traced it back to a genetic disorder that causes a specific protein to not function.

You have to somehow wonder how these people find the courage to carry on with such a dabilitating disorder, although I’m sure if you were to ask one of them how they do it they would shrug you off as though it’s a dumb question. I suppose it is, what other option do you have, and what other life have you known when this is how you are and how you’ve always been. It’s who you are. Regardless, I have endless respect.

update: August 31, 2008

Caught this on liveleak. A baby was bord with Harlequin Icthyosis in Turkey.