A Rare Challenge: Sophomore Finley Boulware and her siblings were the one of the 0.9 percent of people  in the U.S to be diagnosed with Nephronophthisis

When Finley, along with her two other siblings, 17 year-old Lily and 13 year-old Beck, found out they had Nephronophthisis — a rare kidney failure disease — in 2020, they were constantly researching and attending doctor appointments to find out what exactly the disease was.

Finley’s sister, Lily, has already gone through her first kidney transplant, allowing the Boulware family to be more prepared and have a better idea about what’s going on when it comes time for Finley and her brother Beck’s surgeries, though everything won’t be the same and there is always the possibility of complications.

But seeing what her sister has gone through has prepared Finley for what is to come. Finley claims she isn’t as scared as she is impatient to get new kidneys so she can stop taking all the pills and live normally. 

Nephronophthisis ​​is a genetic disorder of the kidneys which is then passed to the children. Finley’s mom Jenny Boulware has the gene, and her father does not. So, there was a 50% chance each kid would get the disease — and three out of the four Boulware children have it. Unfortunately, one of the three was Finley and now is on daily pills to help balance out her kidneys and slow down the process

Now with stage three kidney failure, it’s a waiting game until it’s time for a transplant. Finley has one of the rarest types of blood, making it difficult for her to find a match.

Finley’s family was the first place to look for an O negative blood match, considering her body would be less likely to reject the kidney if it came from a family member. Her aunt came back as a match and Finley will get her kidney as of now, but even this wouldn’t allow the family to breathe a sigh of relief. There’s still a very real fear for Finley and her family that her body will reject the transplant.

“There’s always a fear that Finley’s body can reject the kidney even if it’s a perfect match and then she would have to go on dialysis, which is the last thing we would want,” Jenny said.

Despite her condition, Finley still does what she can in the way of sports and activities — focusing on cheer when her body allows for it.

“People don’t realize the daily restrictions [Nephronophthisis can have],” Finley said. “I didn’t realize it can affect your whole body in how you learn things, memorize stuff, process food, how your bones grow and how your metabolism is. That was a really hard hitter because I didn’t realize the effect it had on my day to day life.”
Finley’s kidneys are at 47% (stage 3) but doctors start looking for a kidney at 20%. They don’t know how long the progression will take, it could be three years or 30. Luckily, Children’s Mercy is one of the top kidney hospitals in the world and she is working side-by-side with world-renowned doctors who have helped her along the way and will continue to ensure she stays healthy.