Four years ago I was given a glimpse as to the magnitude of what we were dealing with for the first time. Sam had broken his right tibia/fibula the previous Christmas Eve. He was not walking well and had a pronounced limp. I had taken Sam to our family doctor and asked for a referral to a pediatric orthopedist. We were referred to Gillette Children's Specialty Healthcare and set up an appointment with Dr. Healy. I was thinking possibly some physical therapy was needed, I'm not sure what else to expect.

It was St Patrick's Day 2010 and Sam was 4 years old. As we took the elevator up to the second floor clinic, Sam asked the woman riding with us about the shamrock she was wearing on her blouse. I don't remember much about check in or the start of our appointment. Dr Healy ordered the x-ray pictured above to check for a limb length discrepancy. Sam still has his preschool body proportions in this x-ray. I was shocked, stunned is more like it, to see all the lesions (tumors, nonossifying fibroxanthoma, lucencies, lots of names will be given to them in the ensuing years) in his legs. Combined with the fact that Sam was in early childhood special education at the time for developmental delay, Dr Healy suspected a syndrome of some type and gave us more referrals, one to genetics and one for a developmental assessment. He cautioned us about the risk of fracture, especially with the top lesion on the right femur and asked us to come back in 6 months. 3 months later it broke.

I left the office dazed. I remember stopping by McDonalds for some food for Sam and I and Daddy who was at home. Trying to explain to Richard what we had taken place was hard. To some degree we are still reeling. We still do not know what this is or how it will play out in Sam's lifetime. Some similarities have been found but not enough to fully identify it. So we call it a fibrous dysplatic condition of bone, more of a description than anything.