Voorheesville couple prevails over genetic disorder to expand family

VOORHEESVILLE, N.Y. (NEWS10) -- One of the leading causes of kidney failure in patients is something called PKD, which affects about 600,000 people in the U.S., including a local man.

Like most newlyweds, after Michael Black was married to Katherine in the spring of 2020, they started thinking about expanding their family. "Kids weren't on the table because I knew once I had it there was a 50 percent chance of passing it on," Michael explained.

He was referring to the genetic disorder he was diagnosed with in 2007, polycystic kidney disease, or PKD. It runs in his family. The disease causes cysts on the kidneys, eventually leading to kidney failure in most. In 2013, Michael had a kidney transplant.

"I would never want to have a child look forward to that in the future," he added.

His wife, Kate, said, "We wanted kids, envisioned kids, after a certain point you think, well, this may not work."

The Voorheesville couple learned through genetic testing they could single out the gene that causes PKD and prevent it from passing on. Kate had to go through four unsuccessful rounds of IVF until finding a fertility specialist who knew about PKD.

Her fifth and sixth rounds provided promising results. "And it stuck, and that's Eloise. She's 18 months."

Michael was able to hold his baby girl in September 2022. Now the couple is sharing their journey to give other families hope. They've been working with the non-profit pkDO.

"The foundation has decided to take this mission on of creating PKD-free babies," Kate explained.

Their goal is to provide grant funding for 100 families who need genetic testing. "Runs through your family, everybody has this thing, if you can erase that, I think that's amazing," Michael said.

The genetic testing and the couple's long road to get pregnant has given their daughter Eloise a PKD-free life, a disease she will not have to worry about like her father.

The non-profit pkDO is helping eligible families with paying for the genetic testing, and they're working with fertility clinics to lower the cost. You can learn more on the pkDO website.