Born five weeks premature, Oshae faced an uphill battle with congenital nephrotic syndrome and stage 5 kidney disease.
Life with Congenital Nephrotic Syndrome
Congenital nephrotic syndrome is a life-threatening condition present at birth that affects the kidneys. It’s characterized by high levels of protein in the urine, leading to swelling and fluid retention. It can contribute to frequent infections and failure to thrive in babies like Oshae. Without aggressive treatment, many babies die within their first year of life.
Oshae dealt with discomfort, low energy, nightly dialysis and nausea. His family looked into getting him a lifesaving kidney transplant. His mother, Valine, discovered she was a match. So, after months of hospital stays, surgeries and infections, October 24, 2024, marked a life-changing moment when Valine donated her kidney to him.
Kidney Transplant for Congenital Nephrotic Syndrome
For children born with congenital nephrotic syndrome, a kidney transplant is their best option. After a kidney transplant, most children feel more energized, live a longer life and can stop dialysis.
Life After Kidney Transplant
“Oshae is like a brand-new kid,” says his mom, Valine. “He’s full of energy, growing taller, and even his hair has grown back since his kidney transplant.”
For the first time, the family has been able to spend every day outdoors, something that felt impossible when Oshae was on nightly dialysis and constantly battling nausea. “The changes are amazing,” Valine shares.
“I plan to travel with Oshae and his three older siblings to visit family he’s never met,” she says. “I’m so excited for him to experience the family gatherings he’s missed during his first 3 and a half years.”
From Direct Donor to Altruistic Donor
Seeing Oshae’s transformation has deeply inspired Valine. “When I reach six months post-op from the (kidney) donor surgery, I want to apply to be a liver donor for a pediatric patient,” she says.
Many people aren’t aware that you can donate more than one organ as a living donor. Our blog answers frequently asked questions about organ donation and shares the experiences of living donors.
Saving her son’s life has been the most rewarding experience, and Valine hopes to help another family waiting for a second chance. “Oshae’s journey has taught me the power of hope and giving back,” she adds.
Pediatric Transplant Care at University Health
Stories like Oshae’s are why we do what we do.
If your child needs a transplant, you don’t have to wait on just one list. Families can explore care at multiple transplant centers and even refer themselves for evaluation.
At University Health Transplant Institute, our pediatric transplant team is here to guide you every step of the way, helping you understand your options and move forward with confidence.
Start the living donor process by completing a donor health history questionnaire.
