Still in the Fight Against PKD

It’s been nearly seven years post transplant for our daughter Quinn and 10 years post transplant for her brother Gage. They are here because of generous kidney donors, Cheryl and Jody.

They needed kidneys because they have a disease rare form of a common disease called polycystic kidney disease. Their version is ARPKD/CHF and includes kidney and liver failure. Their kidneys gave out and their liver situation is “guarded.”

We’re very involved with the PKD Foundation. Our family is responsible for having raised about a half a million dollars. I just finished nine years on the Board of Trustees. We have a Walk for PKD team each year and my husband Julian sends out an email blast to all of his contacts netting thousands of dollars in just days. We’ve attended nearly every convention in the 15 years we’ve been involved and I’ve humbly served the PKD Parents Chapter of the Foundation for as many years with who has become a best friend, Michele Karl. To say we’re “in the fight” is an understatement.

Our family’s life was altered significantly because of PKD. We’ve survived a lot of trauma as a family and our kids as a result of the medical interventions, we’ve put off early retirement for over a decade because of finances and we’ve had to learn how to help our kids become advocates for themselves as they’ve navigated their chronic disease into adulthood.

Why keep up the fight for this many years when our kids will likely never benefit from the PKD research going on now and in the years to come? It’s because of those words, that day I held my daughter when the doctor said,

“Take her home and love her as long as you have her.” 

There was a time when kids like her didn’t survive and many still do not. It’s estimate 30% of the babies born with ARPKD do not make it to a month old. As a volunteer for the PKD Foundation I get calls and emails weekly from desperate parents looking for answers. Looking for hope. The ARPKD/CHF landscape is much different than it was 15 years ago and there’s a community of parents who stand right along side us in our fight.

If we don’t fight after all our kids have been through, I feel like it’s a disservice to them, who have bravely given their childhoods to survive a disease that I hope one day can be treated to change the outcome of failing organs and maybe even eradicated. Then maybe a parent who is holding their two day old baby doesn’t have to hear the same words I did.

Here’s to PKD Awareness Day 2016.