First off, I apologize for not receiving these emails earlier. I would love to share everything that I remember and how it started (problem started before we were aware). It is heretitary but with Don we have no idea where it came from. His father's background is not known. The specialist who made the diagnoses were both pneumonary doctors from India. One of the doctors had experienced or knew about the syndrome. We also had a doctor for infectious diseases, plus I believe two or three more. You can always call me and I can answer as many questions as possible. After Don's lungs were affected his muscles were affected a year later.