The web sites you gave me were quite informative. I hadn't thought about looking under breathing difficulities. My son is an adult, age 33, but he has had this genetic condition since birth. It causes lots of problems, and is progressive so the heart failure was not totally unexpected. He had his first spell nearly 4 yrs ago., but has been able to work, etc. Now the last episode he had in July has led to the oxygen 24/7 and he can no longer work. He has had a lonely life, even with school and work. People can be judgemental as we all know. He does so love WDW and if there is any way to get him there again, I will do it. In Dec 2004, the support group for the condition he has is having their annual convention at WDW. The thing is that most of the children who have MPS are still children as the life expectancy is not great. So at his age he is more of a pioneer for the others and there aren't many answers for us.
Again, thanks. I look forward to reading what info a respitory therapist can supply. We have a doctor who is also not well informed and as of yet we don't have a respitory theripist.