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The St. Augustine teen was diagnosed with advanced Stage 5 kidney failure just weeks before the end of his senior year — and his family is now urgently searching for a living kidney donor before dialysis becomes his only option.
Justin Lepri looks like any other 19-year-old celebrating graduation. But what you can’t see in his photos is that his kidneys are failing. The St. Augustine teen was diagnosed with advanced Stage 5 kidney failure just weeks before the end of his senior year, and his family is now urgently searching for a living kidney donor before dialysis becomes his only option.
A rare diagnosis hiding in plain sight The first signs appeared in March of 2026, during a family vacation on Florida’s west coast. Justin was unusually tired, staying in bed and not engaging with family and friends.
“Even the grandparents were saying, ‘This is different. We’ve got to get him tested,’” his parents, David and Madelin Lepri, said. After Justin became too short of breath to get up for school one morning, his mother took him to urgent care. Scans revealed a mass on his kidney.
He was admitted to the hospital, where a biopsy confirmed kidney failure. Justin spent nine days in the hospital undergoing testing. The diagnosis: NPHP1 — a very rare genetic mutation that damages kidneys, often without obvious warning signs, over many years. By the time it was discovered, his kidney function had already declined to a critical level.
“We were shocked and kind of processing that — just super surreal,” David and Madelin Lepri said. “There’s no cure for that. It’s very rare, and really the answer is to get a kidney transplant for Justin. ” Why Justin’s parents can’t donate Because NPHP1 is a genetic disorder, Justin’s parents don’t qualify as donors.
“We would give our kidney and our heartbeat if we could,” his parents said. “But we do not qualify as donors because NPHP1 is actually a genetic disorder that has come from one of both of our genes coming together and mutating — so it rules us out. ” Justin’s sister, Jasmine Lepri, is currently being evaluated to see if she could be a match.
“I hope to be a match and help my brother out,” Jasmine said. After his diagnosis, Justin was placed on the National Kidney Transplant Waiting List , which already includes more than 109,000 people in the United States. His parents say the wait could be years — time Justin doesn’t have.
“Unfortunately, there’s a lot of people who need a kidney, and that list is very long,” they said. “It could take four to six years before we could even get a call. We don’t have that kind of time with Justin. ” They also note that 12 people die every day while waiting for an organ transplant.
Graduating in the middle of a fight for his life Despite everything, Justin walked across the graduation stage at Nease High School just days after being released from the hospital — a moment his family described as a profound display of resilience. His sister Jasmine says one thing stands out most about him through all of it.
“I think my favorite part about him is his humor — like, through all of this,” Jasmine said. “Because he really is always trying to make light of it, even though it’s pretty serious. So I think that’s pretty admirable from my little brother. ” How to become a living donor Justin is A-positive and can receive a kidney from donors with A or O blood types , regardless of whether the blood type is positive or negative.
Potential donors must be: 18 years of age or older In good physical and mental health All medical expenses for the donor would be fully covered by the Lepri family’s health insurance.
“Anyone who’s willing to donate is fully covered by our insurance,” his parents said. “So they don’t have to worry about the medical expenses. It would be supported by our insurance, which we’re so grateful for. ” His family says a living donor could give Justin something far greater than a kidney.
“We’re blessed to know that we’ll find that donor out there — somebody willing to step up,” his parents said. “Maybe it’s someone we don’t even know, and it could change their life in profound ways too, and certainly will save Justin’s life. ” How to help The Lepri family has set up a donor questionnaire and a fundraising page to help offset out-of-pocket medical costs including co-pays, medications, travel to Gainesville for appointments, and post-surgical care.
Their fundraising goal is $100,000. As of this report, the campaign has raised more than $30,000. Apply to become Justin’s living kidney donor: redcap.ctsi.ufl.edu/redcap/surveys/?s=XNCTAY4CHJDHM44M Donate to the family’s fundraising page: supportnow.org/justin-lepri
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