Historically, kidney disease isn’t known to impact children. Of the 73.1 million children in the United States, just 10,000 are diagnosed with some sort of kidney disease, the most common being nephronophthisis.

In December, 13-year-old Jaxon Shaneyfelt of Turlock was unexpectedly given the news that he had kidney malfunction as he was undergoing emergency orbital cell cellulitis surgery at Stanford University. By March, the Turlock Christian eighth grader became one of those 10,000 as he was officially diagnosed with juvenile nephronophthisis.

“With the diagnosis, things started to be clear because I had known that something was up with him,” explained his mother, Micah. “He had dealt with heavy legs when was younger and had to go through physical therapy, not once but twice.”

Nephronophthisis is characterized by fibrosis that impairs kidney function, which leads to increased urine production, excessive thirst, general weakness and fatigue. It also leads to end-stage renal disease, a life-threatening failure of kidney function that occurs when the kidneys are no longer able to filter fluids and waste products from the body effectively.

The delay in diagnosis could be attributed to the fact that juvenile nephronophthisis is most commonly detected around the ages of 12 and 13.

“He’s had signs that we tried to investigate… but all regular testing had looked fine,” she said.

Once it was determined that Jaxon needed a new kidney, Micah was immediately at the top of her son’s donor list as they both have O-positive blood types. But nodules on her thyroid and a cyst on her kidney made her ineligible. In the months since the diagnosis, Jaxon’s kidney function has dropped from 60 percent to about 20 percent, making the search to find a living donor more urgent than ever.

You wouldn’t realize any of that by spending time with him.

Despite the fatigue and reoccurring pain in his legs, Jaxon is still doing most of the activities he did prior to his diagnosis, such as hanging out with his friends, playing basketball and working on cars.

“I feel like it’s been normal,” he joked.

The one thing that has dramatically changed, other than his kidney function, has been his diet. Jaxon has been advised to stay away from junk food, which can be tough for a teenager. He must also lay off sodium-heavy foods like red meat, which has been a tough task considering that his favorite food is medium-rare steak.

All of his checkups, lab work and surgeries are done at the Stanford Medical Center. The family drives there almost every week, with some visits lasting multiple days.

“It’s a lot,” he said.

“We’re there quite often,” his mother added. “But the support there is simply amazing. Every single person you interact with there cares about my son on a level that you just don’t find in a lot of places. It actually brings me comfort that he’s going to be okay because he’s being taken care of.”

Jaxon shows his support of the medical staff and to the school right back, as he has a closet full of Stanford Cardinal gear. Coincidentally, his great grandfather, Gerald Harter, played football at the university in 1950.

“Oh yeah, we’re a Cardinal family,” Micah said with a wide smile.

Once a living donor is found, Jaxon will then be required to stay at the Stanford Medical Center for two to three months to recover. Him being away from home is a reality already being felt by best friends Reid Fortin, Fernando Zapiain and Dylan Torres.

“Knowing that Jaxon won’t be at school for a couple days because of surgeries, checkups and blood pressure, I’m trying to get used to him not being here, [but] I’m kind of feeling down,” Torres admitted.

“He’s a good kid,” Zapiain added.

In an effort to help with the search, Micah said family members and friends have been checking their blood type and donating blood in Jaxon’s name. There are also a variety of blood-type kits sold at pharmacies and online marketplaces like Amazon. For those who are O-positive, they can contact Stanford kidney transplant coordinator Gerri James by calling her office at (650) 498-4905 or by emailing at GJames@StanfordChildrens.org for more information on becoming a donor.