I recently discovered Julia Robert's blog (no, it's not the actress--oh, think of the money for PKD if it were!). She has 2 kids who have been diagnosed with ARPKD, and her son, Gage, is in the process of getting a transplant. He's only eight. Her blog is a great example of the emotional rollar coaster that comes with living with PKD, as well as the strength required to manage life. And check our her birthday letter to her son. It will have you in tears, I guarantee.
Her brief profile on the PKD Foundation website shows that she is an involved mom who is doing great things in the work towards finding a cure. You go, girl.