Hello, I just found this group yesterday. My daughter was born in 1991 in St. Louis with the most severe level of PFFD, so she has, roughly speaking, an above-the-knee prosthetic. We were very very happy Shriners patients until she aged out of the system. We now live central Illinois and cannot find any prosthetist nearby that can help with a new leg. We found someone at the Rehab Institute in Chicago who is wonderful and very experienced. Unfortunately, our insurance denied our request for a new leg because the doctor is not in our area of service. Although the local prosthetic shops were unable to help us they are also not willing to write a letter to that effect - they'd like to use my daughter as a guinea pig to learn about helping a PFFD person.
Anyway, we're trying to appeal the decision and we cannot change insurance plans for another year. If anyone has any experience with an appeal and trying to convince the health insurnace decision makers that PFFD is rare enough that you can't go just anywhere I would really appreciate hearing from you.