I have a friend, Jen, who is remarkable and she has a remarkable family. I met her as she was seeking support near the day the doctors said her in utero baby would die due to ARPKD and told her to terminate the pregnancy. She didn’t. He lived. And he is a joy to her family. And to me.

I talk to many women whose babies have been recently diagnosed with ARPKD in my role as a volunteer with the PKD Foundation and I don’t always build a close bond. There are a few women this has happened with and I am lucky that I have them in my life – Jen is one of them. Jen is a close friend to me, even though we’ve never met face-to-face. She is fiercely protective of her boys and I dare you to stand in the way of their comfort, their health or their happiness.

Her family’s story was in the Wall Street Journal – it was facilitated by another organization that serves the ARPKD community but one that has people connected to it that don’t take to kindly to the work that myself and other people do for the PKD Foundation; this is no secret. There’s a long back story that I won’t get into here, but some players that support this organization like to make waves that distract from the work that ALL OF US do. I just don’t get it. My point is, we should get to choose our own path as to how we advocate for our family, make connections, or fund raise without being attacked for it. The choices I make to serve the ARPKD community shouldn’t be made to feel wrong. Or less. There are no wrong choices in the world of raising sick kids.

I think people forget that it is about the kids and families of kids with ARPKD. Jen isn’t sure about Parker’s diagnosis. Like Gage and Quinn, he has some other things going on that are sending doctors in different directions, but we connected because of ARPKD. And no matter what organization she supports (she supports both), I’m so happy that we connected to each other.

I’m a better person knowing her and the other women I’ve been lucky enough to be close with because of this life.

Jen, your story is a powerful one. And one I hope will open some people up to a bigger world of compassion and hope. I know that for me, you inspire me to do more for the PKD Foundation. And I thank you.