My Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our little guy.
Evan is our 5 yr. old son and the baby in the family. He has been diagnosed with Langerhan Cell Histiocytosis (LCH)- specifically, Multi-focal bone disease.
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Friday, May 29, 2009 11:05 AM, CDT


We are getting ready for our 2nd Annual Evan's Ride For A Cure.  It will be on Saturday, July 11th.  Please check out our website
http://www.evansrideforacure.com/
Evan's disease is called Histiocytosis and it is a rare blood disease that is caused by an excess of white blood cells called histiocytes.  The histiocytes cluster together and can attack the skin, bones, and organs.  This disease attacked Evan's bones and he has had lesions on his skull, spine, and ribs.  The disease can range from limited involvement that spontaneously regresses to progressive mult-organ involvement that can be chronic, debilitating, and life threatening.  The majority of Histiocytosis occurs in children under age ten.  The disease affects roughly 1 in 200,000 children born each year in the United States.  Histiocytosis is so rare that there is little research into its cause and treatment and is often referred to an an "orphan disease", meaning it strikes too few children to generate government supported research.  This is why we need YOU.  We need your help in donating money to the Histiocytosis Association of America (HAA) so they can have funds available to find better treatments, a cure, and prevention of this disease.

Please come out on Saturday, July 11th!  Even if you don't ride a motorcyle, please come and donate to the HAA.  There will be live music, awesome door prizes, 50/50 drawing, and lunch.  If you can't come, but would still like to donate, there is a link on the http://www.evansrideforacure.com website that will allow you to do so. THANK YOU!!

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HOSPITAL INFORMATION

Clarian Health - Riley Hospital for Children
1704 N. Capital Ave
Bld. B Rm 251
Indianapolis, IN 46202
United States