This is my boss
From: Day 11: Organ and Tissue Donor Sunday. : Kidneys and Eyes
In September 2001 Quinn was born and diagnosed with polycystic kidney disease. She would need a kidney transplant to survive they said. We were told: “with kids like this you need to take her home and love her as long as she is with you.†Three months later, Gage was diagnosed with PKD as well and we were devastated once again.We’ve lived our lives with this congregation.
We didn’t know then he would be placed on the national list in need of a kidney transplant by age 7.
For the next few years we tried to act like a normal family. We were active in this church, our kids were in activities and school, we moved, we worked. And the kids were regularly tested and took many daily medications to control the devastating effects of PKD.
Knowing your child has a progressive disease and waiting for your child’s organs to fail until you will be able to do something in nearly unbearable.
Now go read the rest of it.
Yeah, I’ve been following them for a while.
I’ve actually got the “adult” version of this disease (though it was obvious I had it when I was born, so it just showed up early for me). I’m just lucky that it didn’t progress at the “kid” version rate, as Gage’s and Quinn’s are. :/ It really is awful, though, that you have to keep feeling worse before something can be done.
Wow.
That’s amazing.