New to Inspire

Hi there everyone. This is my first journal and I'm really not sure what to write but here goes nothing. I am the mother of a six year old boy that was diagnosed with SAPHO Syndrome in April, 2008. The road to that diagnoses was long, hard, and at times very scary and frustrating. Last year is when things got the worst because Rylee woke up with the left side of his face swollen and distorted. After 5 weeks of misdiagnoses I finally took him to the ER here in Newfoundland Canada where they did an ultra sound that was inconclusive. I bought him back the next day for an emergency CT Scan and that is when we were told that Rylee had a tumor in his jaw that was eating away the mandible and this type of cancer had a 50% mortality rate in the first 5 years. He was admitted immediately and was scheduled for a battery of test including a biopsy. Our lives shattered that day and we were living every parents worst nightmare. Because of postponements it took 14 days before the biopsy was finally done and at 6:30 in the evening the doctor came into Rylee's room to tell us that the pathologist's preliminary report showed no signs of cancer. In fact the doctors had things backward, the holes in his mandible were filled with fibrous tissue that formed the mass that was embedded in the jaw muscle. As you can imagine we were relieved beyond words but we still had no answers as to why this happened or what was going to be done to fix it. Two days later a doctor came to us and said that Rylee has SAPHO Syndrome and all she knew about this disease was what was wrote on the 2 sheets of paper that she was holding in her hand. Apparently, there was 1 doctor in the hospital that was curious about my son's case so he started to go over his whole life history, which was so long that they had began a third file on him, and as he put it "the pieces of the puzzle started to fit together". This doctor was the only doctor in the whole hospital that had even heard of SAPHO because there was one child that was wrongly diagnosed with it only 2 months before.
So started the roller coaster ride that we have been on since that day. To explain SAPHO to the best of my knowledge, it is an overactive immune system that attacks the skin, bones, and joints. To date Rylee has 4 out of the 5 markers for this. Ironically, the 1 that he doesn't have is the least painful.
The doctor that diagnosed Rylee sent us to the NIH and answered our prayers. There is no cure for him but thanks to the medications that the NIH doctor prescribed for Rylee, the holes in his jaw bone have since healed, the arthritis in his hips, face, and hands has subsided significantly, and his Pustules Psoriasis is cleared up 75% or more.
If anyone who reads this knows of other kids with SAPHO Syndrome, I would really appreciate it if they would contact me. I have never spoke to another parent of a child with this and I have only found 1 adult.
Thanks to those of you who took the time to read this journal entry and I'm sorry that it's so long.