From Heartache to Hope. 

Video Transcript

0:00

I am one of the lucky ones. So lucky to have found lasting love so early I fell in love with my Joanne. At 20, we were engaged at 21 and I married her at 23. Our amazing kids followed soon thereafter, in a blink of an eye, they were grown, independent, and thriving. The dividends of our hard work and starting our lives, our family early, we're paying off now in our early fifties with our 30th anniversary right around the corner. We still adored each other and had the friends family flexibility and means to enjoy life, and we were, life was spectacular and we were excited about what the next 30 years would bring, but life has a way of going off script. A few months before our 30 year anniversary, COVID started shutting down the world. I immediately recognized this as a mortal threat to Joanne, who is immune suppressed due a kidney transplant. Six years earlier, within 48 hours, our two kids were home and we were hunkered down for an extended lockdown to make sure that we kept Joanne safe.

1:51

For us, the lockdown was easier than most. It was a privilege and a joy for Joanne and I to have our two adult children working from home and having dinner with us every night. There was no friction having the four of us under one roof again. Well, there was one day when Joanne was making charity outreach calls to senior from the kitchen when we were all working nearby, and my daughter went to text my son about how loud and annoying she was being and inadvertently sent the text to Joanne. Joe took it with a smile and continued to make her calls even louder. That's how things rolled in our family. The one challenge that we did have during the lockdown was Joanne's kidney function started to decline again, and it was apparent that she would need another kidney when the pandemic was over. 

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Joanne had PKD genetic condition that causes kidney failure typically by your late forties and has the 50% chance of passing down to each of your kids. Joanne's mother had it, had two kidney transplants. Her sister's been on dialysis for 10 years. My nephew has it. Both of my kids have it. I donated my kidney to Joanne in February of 2014 when she was 49. I needed to lose 50 pounds in 90 days in order to be eligible, but that's a story for another day. For 30 years, we were told by every doctor that we saw that there was nothing you could do about PKD until your kidneys failed. At 23 years old, I knew that one day I would donated a kidney to Joanne and that's what I did. But I also naively assumed that once I donated that kidney, that PKD would be largely behind us, and that was not the case and I desperately started looking for better outcomes for my family.

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In my research, I learned that with IVF and genetic testing, they could screen fertilized embryos, determine which ones are PKD free and only implant those, making sure that future generations no longer need to deal with this disease. I took comfort in knowing that future generations of my family would be spared by New Year's of 2020, hope was back on the horizon. The vaccines had been approved, and it was only another month or two before Joanne would get it. It looked like life would be getting backed on script, but that would not be the case.

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Five weeks later, my Joanne was gone. The loss was sudden. The grief was overwhelming. My body went numb and my brain completely shut down. But in a letter that I wrote her after she passed, I made her a promise I will get past my sorrow by being more like you putting the needs of others before myself. In the months of sleepless nights that followed, I would force myself to focus on how I would keep that promise from those sleepless nights. The vision for PK DO was formed. We would do something about putting an end to PKD by making sure that all families with PKD had the awareness and affordable access to this. Lifesaving Miracle. PKD has been formed as a public charity, and in July of 2023, less than a year ago, we launched our PKD Free Babies Initiative. We already have eight major medical center partnerships, two national fertility Center partnerships offering discounts, which combined with our grants, will reduce the cost of this miracle of modern science to families interested in having a PKD feature by 50%. We are already working with over 80 families to help them have a PKD free future and already four babies born, PKD free as part of this initiative, every time we give another family hope, Joanne comes down and gives me a hug. It just makes me want to do even more.

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When faced with loss and adversity. It is natural to feel like a victim and to get bitter, but I encourage you to seek to get better by finding a way to help others. In turn, life will give back to you. It certainly has for me. Thank you.