My name’s Kate. I have PKD, and my son, Owen, has PKD. So, finding out that first day, everything was really kind of a blur. Our doctor explained what PKD was and then said please don’t go home and Google this, because there’s a lot of information, and most of it is really scary. We were in that fearful place of still not knowing how he would be when he was born, if he was going to survive, if his kidneys were going to be functioning well.

We really ran the gamut after that…of crying and being scared and not knowing what was going to happen, trying to figure out how much information to share with our family and friends and how to share that information and even thinking forward to do we want to have any more children after this, what are the chances that another child could have PKD and then the idea that it might not be fair to try to have another baby, that we could go through the whole process again and lose a baby or that my body might not handle it. I’m really thankful that we ended up changing our minds on that later, because we have two beautiful boys, and we’re really lucky that for a long time we were not sure that we would try again.

Hear more of Kate’s story.