Klaus Dragon H. is 6 year old boy who loves his family and pets. Klaus enjoys the outdoors, playing in the snow, anything to do with water, and collecting rocks. Bugs, sticks and sand bring simple joys to his life.
Klaus has a very rare soft tissue sarcoma called "plexiform fibrohystiocyctic tumor" that was first discovered in his mouth on January 2007. The oral location has been very complicated for a child and the disease is so mysterious that it was not correctly diagnosed until it reoccurred 3 times and spread to lymph nodes in his neck. Because this orphan sarcoma's rarity (approx. 125 cases in literature) the best course for cure is aggressive surgery because there are no studies to say if radiation or chemotherapy would have any effect on the tumors.
In May 2009 Klaus had an aggressive 12 1/2 hour surgery- a radical neck dissection and the removal of part of his lower jaw, replacing it with his fibula and leg tissue. This they hope will be his cure. He has had a total of 6 surgeries at this point, and will need more for future reconstruction.
We hope through additional research, some of these orphan diseases and Sarcomas, more children will have more options than just aggressive surgery for a cure in the future.
