How kind of you to care so much for that child! And how sad and maddening that he and you have to deal with those....GRRRR... >
If you would like to discuss those issues with people having a PWS, I suggest you visit www.birtmarks.com
. I know I recommend it all the time (although I do not have a PWS and am not a member of that group): it's because it is the best supportive group on PWS. There are also parents of children with PWS who belong to that group.
Another group where you would find discussion of similar experiences, and who is also a wonderful supportive group is http://groups.msn.com/vascularbirthmarksupport
Has the boy got laser treatments? And what about make up? On the first site I mentioned above they also talk much about laser treatements, insurance, make up...
I wish you the best: you deserve it.