Hi Staciemomofpnkd
Welcome to NeuroTalk.
I have only been a member for a short time but have discovered that it is a very supportive and knowledgeable community.
I am sorry to read of your daughter's PNKD diagnosis.
You might find the fairly technical information about it here helpful;
http://www.medscape.com/viewarticle/581684 .
All the best.