Hope After Heartbreak: Our Family’s Journey with ARPKD
Written by Alexia, a mother sharing her family’s journey with autosomal recessive polycystic kidney disease (ARPKD).
Both our children were born with Autosomal Recessive PKD (ARPKD). There was no family history of this genetic disease previously. My husband and I carry a recessive gene that our children inherited.
I learned about IVF after my son was born, but my insurance did not cover it at the time, and we couldn’t afford the out-of-pocket costs at the time. We decided to have another baby when our son turned 10, and the baby was also born with ARPKD. Her condition was diagnosed during my 3rd trimester of pregnancy. Her condition was even more severe, and she could not stabilize her blood pressure post-nephrectomy. Our daughter, Anaia, lived for five beautiful months.
As a result of the pain and suffering that came along after our loss, we decided to move forward with IVF with Preimplantation Genetic Testing. This process was extremely stressful and isolated, especially with trying to figure out what was covered and not covered through insurance. We maxed out our credit cards because we were told we couldn’t start the process without paying all the costs first.
I started researching to see if there were any other options or support groups that could help our family through this process. Shortly after that, I found PKD-Free Alliance and decided to reach out.
I am so glad that I came across this organization—our contact person, Melinna, was an angel. We thankfully were approved for financial support and had a beautiful PKD-free baby girl in 2025, one day before Thanksgiving. We are extremely grateful for all the words of encouragement and support that PKD-Free provided during such a vulnerable moment in our lives.
