A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No oneRead More →

One would think that after all these years of dealing with the Insurance, Medical Groups, Doctors, NPs, Referral and Service Personnel and the Medicalese involved, I would no longer have to deal with the insanity and run-around of people telling me completely different things, but I suppose I am no immune to ignorance. Just because I’ve dealt with stupid people before, that does not mean it’s not going to happen again. Ugh. Late last year the company that provides usRead More →