We are SO HAPPY! Katy Magazine has published Sophie's story!!!

http://www.katymagazine.com/articles/2011/summer/Katy-Texas-My-Story-Helping-Sophie-Heal-Katy-TX.pdf

 

My daughter was diagnosed at age 9 with LCH. she lives in fear of this terrible disease every day, thou so far (luckily) it has only caused her to have one surgery to remove a tumor that had eaten through a 3cm hole in her skull. Now the doctor suspects pituitary involvement, and has ordered an MRI which will be done tomorrow. Tons of testing has been done on her, I know she feels like a pin cushion!  MUCH RESEARCH is needed, and the medical community needs to be EDUCATED about Histiocytosis! To many the disease is fatal, but to us, it is terminal. She will live in fear of another flare up for the rest of her little life. PLEASE HELP however you are able!