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Friday, April 17, 2015

World Hemophilia Day


Today is World Hemophilia Day. 

For many summers I had the privilege of taking care of young hemophiliacs at The Hole in the Wall Gang Camp. Many of my pals outside of camp had these crazy misconceptions of the blood disorder. To put it simply, hemophiliacs have low levels of Factor VIII or Factor IX, the proteins needed to clot blood. As my friend and former camper, Conor, recently said in a post, "...it's a crappy disease that can leave you with a giant pile of complications if not managed appropriately."

Who's Conor? Conor is the kid who was the initial inspiration for Monkey Boy. Back in the fall of 1999 I was working at camp and started calling Conor "Monkey Boy" and he started acting the part...for the duration of our camp session! This photo was taken in 2001, shortly before Good Night, Monkey Boy was published. 

What is Conor up to now? He's studying to be a doctor! Seriously, what an inspiration. I'm in touch with many of Conor's peers, and they all grew up to do such amazing things. 

The CDC has posted a great summary of what hemophilia is all about here: http://www.cdc.gov/ncbddd/hemophilia/facts.html?mobile=nocontent

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