Two months after Quinn was diagnosed with ARPKD I called the PKD Foundation to see about starting a chapter in our large city. I thought it was ridiculous that there wasn’t a chapter here for people (like me) to call and get support when faced with a PKD diagnosis.

Back then, the PKD Foundation was desperate to have volunteers start up chapters and I was a warm body. You get the idea. I had to fill out an application (one of the first that they required for this volunteer position) and was interviewed by the Foundation’s staff person as well as two other volunteers. At the time Julian said that if they didn’t offer me this volunteer position I had big problems.

A day after Gage was diagnosed with ARPKD the Foundation called and offered me the position and I said yes and that was just about 6 years ago. The main reason I had wanted to get involved was completely selfish. I wanted to be on the front lines of research (I am). And I wanted a straight line to doctors who were interested and knowledgeable about ARPKD should I need them (I did and still do) and I wanted to have friendships with other people affected with PKD (I am, and my cup runneth over).

I love the PKD Foundation and what they do. I feel a huge sense of responsibility to them because of what they have given me in terms of helping me be an informed parent and most importantly, an advocate for Gage and Quinn.

The positives? I’m a better parent of sick kids then I would have been, I have met people who have changed the course of care for Gage and Quinn, I have met friends that will be in my life for the duration I’m willing to bet, my kids have at the very least, real, live connections with other kids with ARPKD, it allows me the opportunity to do something positive in honor of Gage and Quinn, I feel that I make a difference and that is rewarding, our story is out there and it gives people new to the diagnosis hope, and it allows me the chance to stay on the front lines of information out there about PKD.

Negatives…well, I don’t get to do as much or give as much as I want to at times because of life. It takes my volunteer time away from the kids’ schools (which often makes me sad because I had always pictured me being that kind of mom way back when when I dreamed of children with my beloved).