COTA for Team Nolan

Our Story

Nolan is a sweet and playful little boy who is waiting for both a kidney and liver transplant—all before the age of two.

At our 20-week ultrasound, doctors noticed a small amount of fluid around Nolan’s right kidney. We were reassured this was common and likely to resolve on its own. If it didn’t, the plan was simple: follow-up imaging after birth, continued monitoring and, at worst, a routine procedure to correct the issue. 

But after Nolan was born, that imaging revealed something unexpected—cysts on his kidneys, unrelated to the initial concern. This led to extensive genetic testing and ultimately a diagnosis of a rare recessive kidney disease that causes kidney failure in childhood.

If it weren’t for that unrelated imaging, we would have had no idea anything was wrong.  

For a time, Nolan’s kidney function remained stable and life felt mostly normal, as long as we could put the diagnosis out of mind. 

But shortly after his first birthday, everything changed. Nolan began facing hospital stays, many daily medications, frequent blood draws, imaging, feeding tubes, blood transfusions, a specialized diet, and countless appointments with specialists. It became clear that he would need a kidney transplant within the year.

Although his condition can involve the liver, only about 1% of children with this already rare diagnosis require a liver transplant as well. While we were focused on helping Nolan gain enough weight to qualify for a kidney transplant—and doing everything in our control to avoid dialysis—his liver labs suddenly worsened.

Within just a few weeks, Nolan was placed on the national transplant waiting list for both a kidney and a liver. It was a rapid and overwhelming series of events.

Today, Nolan is facing end-stage kidney disease and progressive liver disease as he waits for his life-saving transplants.

We are hopeful that this chapter will soon lead to healing and a healthy future for Nolan. However, transplant is not a cure—it is the beginning of a lifelong journey. As a transplant recipient, Nolan will require ongoing specialized care, and the anti-rejection medications he must take for life will leave him immunocompromised.

To help navigate this journey, we have partnered with the Children’s Organ Transplant Association (COTA), a nonprofit that assists families with transplant-related expenses. We are asking our family, friends, and community to support COTA and help ensure Nolan receives the care he needs—both now and in the future.

Funds raised for COTA will go directly toward transplant-related expenses, as well as help offset everyday living costs for patients and their families during periods of unpaid time away from work during transplant or any additional hospital stays. Our partnership with COTA will allow Kara and Nick to focus fully on caring for Nolan when he needs it the most. 

Whether you choose to donate to COTA for Team Nolan, share Nolan’s story, or keep him in your prayers, your love and support means more than words can express.

#BraveLikeNolan

Intagram: @bravelikenolan

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.