Our daughter was born 5 months ago with PFFD in one leg (unilateral PFFD) as a class C or D Aitkens.
We had known ahead of time that she would be born with PFFD becuase we had discovered it during a routine ultrasound. The doctor who made the announcement was very discouraging, but that night we discovered the PFFD VSG as setup by Mike Malloy. It was more wonderful than words can describe. The stories there were uplifting, the people we contacted were very encouraging, and the information better than anything else we found. When our daughter was born we welcomed her into our lives fully with love, joy, and our hearts at ease.
But we wanted a bit more from the original site. One issue was that in order to be a participant in the PFFD VSG community we would have to post e-mail addresses (or other contact information) that were visible to people beyond the PFFD community.
I contacted Mike about possibly setting up a community site for the PFFD VSG - something with forums, private messages, and the ability for people to add and modify their own pages. He agreed and this site is the end product of that conversation.
In the near future we will be setting up a database that allows people to enter their experiences, similar to what has been done for other medical community sites so that we can get an "in-the-field" estimate of what treatments people have used and are happy with. If you have any suggestions - please send them, or sign up and add something to the pages.
Cheers,
rar