At age 2, he got a new kidney. 4 years later, his Missouri mom prays for another
Danielle Bonnell says her son, Waylon, is just like every other 6-year-old boy. He enjoys dinosaurs and cars, loves saying “oh my heck” — even though he doesn’t really know what it means — and giving cuddles and kisses.
But what you wouldn’t know just by meeting the “sweet” and “full of life” boy, who will be 7 in September, is that he’s sick.
At 17 months old, Waylon was diagnosed with Nephronophthisis 13, a rare genetic disorder that damages the kidneys, leads to end-stage renal failure and affects only 1 in 922,000 in the United States. Since then, he has endured 15 surgeries, including the removal of two kidneys and a kidney transplant.
And now, Waylon needs another kidney.
Bonnell says after Waylon’s first kidney transplant in 2021, things were “so great,” but in August of last year, things began to change.
“We got labs back, and I saw the numbers, and I said, something is very wrong. And I called his team at Children’s Mercy, and I said … something’s wrong, bad, you know? And so they had me bring him in, and he was hospitalized for like a month,” Bonnell said.
The kidney twisted inside of Waylon’s body, cutting off its own blood supply and leaving him in pain. He underwent surgery to untwist it, but the kidney never fully recovered. The kidney’s main vein remains clotted off from the torsion.
Now, three days a week, he travels from Nevada, Missouri, to Kansas City for hemodialysis. Because his kidney doesn’t filter out toxins when he urinates — and at one point before surgery he wasn’t urinating at all — he has to have a machine do it for him.
Hemodialysis mechanically removes waste and extra fluids from the body by filtering them out of the blood, according to the National Kidney Foundation.
Getting to Kansas City three times a week has been difficult, says Bonnell, who’s a single mom. She’s going through this on her own, and despite having a nurse who rides with Waylon to two of his appointments during the week, they need a medical ride for transport.
“The nurse cannot drive up to Kansas City, it’s like against insurance, so usually we have a medical ride, but our normal ride had to leave the country. He should be back in two weeks, I hope, and it’s just been a mess trying,” she said.
When issues arise, Bonnell often has to miss work, which has left her worrying over how she will pay her bills and provide for her three boys. But things are looking up for Waylon, and she says the good news “gives me some relief.”
“It’s all worth it because I would do anything for him,” she said.
Searching for a living kidney donor
Waylon should be cleared for transplant in the coming weeks, his mom says, he just needs a donor.
Amid posting flyers around town and driving around with one on her car, Bonnell has taken to social media to find Waylon’s perfect match. She runs a Facebook page that updates over 580 followers on Waylon’s journey, but says it was a recent post on Reddit that, according to her, has caused at least 15 strangers to call The University of Kansas Health System to see if they are a match.
“So many people reached out about interest in testing to see if they can donate to him and I just could not believe it,” said Bonnell.
Bonnell is hoping for a living donor to give her son his best chance. On average, organs from living donors last longer than those from deceased ones, according to the American Transplant Foundation, and those who have a living donor don’t have to wait on the transplant list.
For Bonnell, the end goal of the living donor search is “a better life for Waylon,” but she also sees the opportunity to spread awareness about children on dialysis and those in need of living donors.
“So (the Reddit post is) kind of creating some awareness, you know, out there that, hey, there are kids out there that need these … because most people don’t hear about it until they do,” Bonnell said. “So I kind of link that post with that too because people are aware … there are kids that, you know, need kidneys and maybe it will encourage people … to seek a program to donate to a child.”
Waylon is seeking donors with type A or O blood. Those who are interested in seeing if they are a match for Waylon can contact the Center for Transplantation at The University of Kansas Health System at 913-588-3961 or kidneylivingdonor@kumc.edu. They can also reach out to waylonskidney@gmail.com for more information.
This story was originally published June 11, 2025 at 1:01 PM.
CORRECTION: A previous version of this story mistated the name of the transplant center, which is the Center for Transplantation at The University of Kansas Health System.
