How a Social Media Post Led a Teen to Find a 'Kidney Buddy' for Life

PALO ALTO, Calif., April 18, 2024 /PRNewswire/ -- Sarah Best was scrolling on Instagram while at home in Sacramento when she came across a stranger's story. It was about a teen who needed a kidney.

"Being O negative, I give a lot of blood, but I always had the thought of wanting to do something more," Sarah said. "When I saw that post, it just felt like it was that time."

The story described a 14-year-old named Jaxon Shaneyfelt from Turlock, California, who got unexpected news that he had kidney failure.

Sarah called the number on the post, which led her to the transplant coordinators at Stanford Medicine Children's Health to begin the living donor screening process. In November 2023, she was approved to donate.

Jaxon was less than six months from requiring dialysis, said Thomas Pham, MD, pediatric kidney transplant surgical director at Stanford Children's. "Sarah helped him immensely because he didn't need to go on dialysis. That will help with his long-term outcomes. She's also saving another life because it's making an organ available for someone else on the transplant list. With just one act of goodwill, the impact overall is immeasurable."

Before his diagnosis more than a year ago, Jaxon felt like nothing was wrong.

"He was living a normal life," said Micah Shaneyfelt, his mom. "In December 2022, I noticed that Jaxon was extremely fatigued. After taking him to two different doctors, he continued to get worse—we drove him immediately from our home in Turlock to Lucile Packard Children's Hospital Stanford. They performed scans, multiple tests, and saved his life."

Jaxon had orbital cellulitis, or an infection around his eye. As a part of the check-up, he got lab work and an ultrasound. When those results showed abnormal kidney function, Ruby Patel, MD, pediatric nephrologist at Stanford Children's, sent for a genetic test.

Jaxon was diagnosed with nephronophthisis, a genetic disorder of the kidneys. Children who have this disease need a kidney transplant by the time they're teenagers, as it eventually leads to kidney failure.

"He went from thinking everything was fine to now being told he needed a transplant within a year," Dr. Patel said. "That's hard for anybody."

Facing the news head-on

After his diagnosis, Jaxon and his family met Jennifer Tanaka, RN, BSN, CCTC, his transplant coordinator, for an evaluation appointment to prepare for when he would get sick enough to need a transplant.

"I work with a lot of potential recipients, and sometimes it can be hard for them to reach out and ask for help," Tanaka said. "But, I always tell them, you never know what's out there unless you ask, because there are people that truly do care."

That's exactly what the Shaneyfelts did.

"As soon as we got Jaxon's juvenile nephronophthisis diagnosis, I started sharing his story immediately, since I could not be his donor," Micah said. "I knew it could take some time to find a match, so I needed to get the word out every way I could. We're blessed to live in a time where we have Facebook, Instagram, and all of the other social media platforms."

In June 2023, Jaxon did get sicker. He was more tired at school. He had to visit Stanford Children's more frequently because his lab results were not great. Jaxon needed a transplant soon. A few months later, he received a fateful call that somebody wanted to donate their kidney to him.

Kidney buddies for life

On Dec. 19, 2023, Sarah drove from Sacramento to Stanford Medicine. The next day, both Sarah and Jaxon had their surgeries.

"Sarah is truly the definition of altruism," said Gerri James, RN, BSN, CCTC, kidney transplant program manager. "It's a big deal donating to somebody you don't know, and she said, 'As long as I'm home with my family for Christmas, I'll be fine.' It's amazing. That's the best gift Jaxon will ever get."

Jaxon then received another gift. Not all recipients get to meet their donor, and not all living donors meet the patient they helped. But these two had the opportunity at a clinic follow-up.

"The Shaneyfelts are just so sweet," Sarah recalled. "They had no idea who I was, but when I walked in the room, it almost felt like friends you've always had. As we started talking, all these connections started forming. It just feels good that you can help someone live, but there are emotional days. I hope this kidney gives him a long time of healthy living because he's a 14-year-old boy. He should be out having fun."

Jaxon and his family presented Sarah with a kidney plushie they signed with a special message.

"The kindness Sarah's given us just makes me speechless," Jaxon said. "Seeing the person who saved my life made me feel the same way. I want to say thank you again and again to my kidney buddy."

Jaxon is back in school and looking forward to playing basketball again. While getting back to daily life is important, he is also looking forward to the many more meetups he'll have with his kidney buddy, including teasing Sarah's husband about being a Dodgers fan.

"When things started to feel a little discouraging, someone was placed in our lives to lift us up and encourage Jaxon—whether that was his care team, the Turlock community, or his angel on earth, Sarah," Micah said. "Words will never be able to express our appreciation. We are hoping that someday, there will be no wait list, but an abundant list of living donors to give the same gift of life."

The team at Lucile Packard Children's Hospital Stanford has performed more pediatric kidney transplants than any other U.S. center. Learn more about the pediatric kidney transplant and how to become a living donor >

Contact:

Katie Chen

katchen@stanfordchildrens.org 

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SOURCE Stanford Medicine Children's Health and Lucile Packard Children's Hospital Stanford