Mastocytosis Awareness

Hello, my name is Kristina and I made this page to help raise awareness in a very rare health condition that my son, Chandler has. Here is our shortened story ~ Chandler was born a very healthy baby and stayed that way until he was about 6 months old. He started getting these spots all over his body and then came the fever, crankiness, and he eventually stopped crawling. We went to two emergency rooms who sent us away without doing one test claiming it to be a virus and it would go away on it's own in a week. When it didn't go away, we visited his doctor who thought maybe it was an allergic reaction to a new food so we stopped all new foods. Still nothing. One night he stopped eatting and drinking, it was then that we took him to yet another emergency room. This time they ran tests and realized there was more going on. They didn't have a unit/area for babies/toddlers so we were transferred to Arnold Palmer Hospital in Orlando. Chandler stayed a week there and during that week, he undergone many tests from basic pee/poop tests to blood tests to being put to sleep three times in three days - once so they could put a camera inside of him via the mouth and then again for a bone scan and once more for a CAT scan. When they got his temperature under control (it was in the upper 102s), they released him stating they did all they could do and could not find out what was wrong. We worked with his regular doctor and did some more tests. Finally, we drove 2 and 1/2 hours (one way) to go see a skin doctor who dianosed Chandler with Urticaria Pigmentosa on November 25th, 2003 and just to make sure, a biopsy was done in December and the results were given to us in January of 2004. Chandler is now almost 5 years old. His outbreaks come and go without warning. Some of the symptoms, Chandler suffers from are flushing/rashes, fever, stomachaches, bone pains, headaches, irritability, nose bleeds, and more. There is currently NO cure for this. Mastocytosis is a rare disease whose cause remains unknown. What we do know is that the disease is the result of an overabundance of mast cells that are found normally within every human being's body tissues. Mast cells contain chemicals that are released into our systems to perform their various duties. In mastocytosis, the excessive number of mast cells release more of these chemicals than the body requires. The symptoms of mastocytosis are caused by the excessive amounts of chemicals interacting with body tissue.Pediatric mastocytosis can take several forms, varying from mild forms to more severe forms of the disease. Any form of the disease presents challenges to raising children, and educating others on how mastocytosis affects their lives.RESEARCHING MASTOCYTOSIS REQUIRES RAISING FUNDS, BUT TO SUPPORT FUNDRAISING ACTIVITIES, WE MUST FIRST RAISE THE LEVEL OF AWARENESS OF THIS DISEASE. THIS IS OBVIOUSLY A BIG TASK; HOWEVER, EVERYONE CAN CONTRIBUTE TO RAISING AWARENESS - AT LEASE ON SOME LEVEL. THANKS TO ALL OF OUR SUPPORTERS! IF YOU WOULD LIKE TO MAKE A DONATION TO HELP FINDING A CURE / HELP SUPPORT, YOU CAN CONTACT ME AND I WILL SEND YOU THE INFORMANTION YOU NEED TO DO SO. THANK YOU!