When Anthony Rogina met his wife Natasha nearly a decade ago, she shared a difficult reality with him: polycystic kidney disease (PKD) runs in her family. Her mother, grandma, and a couple of her aunts were affected by it. Natasha’s chances for having it were 50/50, and she knew that there was a strong chance of the disease passing down to their future children. She was officially diagnosed with PKD nine years ago.

PKD is a chronic genetic disorder that affects over 600,000 people in the U.S. alone. The disease causes clusters of cysts to develop in the kidneys, impairing their ability to filter waste from the blood. Over time, PKD progressively worsens, and about 50 percent of people with PKD have kidney failure by age 60. The disease is often invisible until symptoms become more severe. Natasha, who recently turned 31, currently has good kidney function, but the disease significantly impacts her life and has even led to a kidney transplant.

After moving to Colorado, Natasha’s nephrologist recommended that the couple look into IVF (In Vitro Fertilization) and Preimplantation Genetic Testing (PGT-M). This would allow them to screen for the PKD gene and give their children a chance to lead PKD-free lives.

“It’s not for everyone, but for us, that’s the decision we made, that if there’s a way we can try to prevent our children from having this disease… we want to explore that,” says Anthony. 

Natasha began sharing their story on Instagram, which caught the attention of the PKD-Free Alliance, an organization committed to educating and supporting families facing PKD. They invited her to become an advocate, amplifying her voice to share hope, education, and support to other families navigating PKD. 

The Rogina family was a recipient of a grant from the PKD-Free Alliance, allowing them to work with local genetic counselors and IVF specialists to ensure that they stopped the spread of PKD from being passed down. PKD-Free provides qualified PKD-impacted families with resources, grants, and discounts from top fertility centers nationwide.

In March of this year, Natasha was named “Chief Spokesmom” for the PKD-Free Alliance. She is stepping into the role with gratitude and a hope to encourage other families, saying, “PKD-Free gave me and my husband, Anthony, the support and resources we needed to make our dream of having a child without PKD. We are truly blessed to have an amazing PKD-free child, Juliana. As Chief Spokesmom, I will be sharing my personal experience with others, answering questions, and showing PKD-impacted families that there is something that can be done. PKD ends with me in my family, and with PKD-Free, we can ensure a PKD-free future for all.” 

Reflecting on his family’s experience with PKD-Free, Anthony says, “It’s been great to see how they’ve been working together and how it’s grown since they first started talking a few years back.” He adds that it’s important to be as supportive as possible: “It’s a mental and emotional journey for everyone. [Be] a supportive partner and [try] to be level-headed. Understand that it’s not always going to go perfectly.”

Now, with a healthy daughter and a story that continues to inspire, the Roginas are passionate about helping other families navigate life with PKD. Through Natasha’s advocacy with the PKD-Free Alliance and Anthony’s unwavering support behind the scenes, they’re showing others that PKD journeys can be full of hope. 

Learn more about the PKD-Free Alliance