Lux’s family found the specialty services he needed, from neonatology to ongoing nephrology care, at CHoR
Lux is curious, funny and incredibly loving, always finding a reason to make someone smile. It’s a true gift in the best of circumstances, but this 5-year-old manages to brighten tough days too – and he’s experienced more than his fair share of those.
Lux was diagnosed with renal cystic dysplasia a few weeks after birth. His birth hospital didn’t have the specialized expertise he needed, so he was brought to CHoR for coordinated care from our nationally ranked neonatal and nephrology teams.
“After he was transferred to the NICU, I knew we were in the right place. The team was thorough, compassionate and truly invested in Lux’s long term wellbeing, not just the immediate medical issue,” said his mom, Ciara. “Marty from the NICU is someone I’ll never forget. She guided me through everything Lux needed before we brought him home and made sure I felt confident.”
The road to pediatric kidney transplant
Cystic kidney disease causes fluid-filled cysts to grow and damage the kidneys. In Lux’s case, it caused chronic renal failure that progressed to end-stage renal disease. A kidney transplant was the only option.
Our nephrology team helped Lux manage his condition with dialysis, which filtered water and waste out of the blood until he could receive his transplant. He had clinic visits, hospital stays and long days in dialysis. He passed the time building Legos or participating in art therapy. Music was always a sure way to get through the day with a smile too.
“One of my favorite memories is when he and I did a ‘duet’ in the clinic one day singing Little Mermaid,” said Dr. Tim Bunchman, who not only leads the team as chief of the Division of Pediatric Nephrology, but has a silly side too.
Dr. Bunchman noted that the continuity of care Lux has gotten from his team of nephrology dietitians, social workers, nurses and physicians has been helpful in his success.
“So many CHoR team members have left a mark on us. His transplant team, especially Dr. Bunchman and the nephrology nurses, have been incredible,” added Ciara. “They don’t just care for him medically when they see him. They take their time with us, explain everything, check in on how he’s really doing, and make him feel safe and known. They celebrate his wins like they’re their own. Their genuine care has changed our entire experience.”
Transplant day came in October 2024 and his mom said, “it completely changed the trajectory of his life.”
At age 5, Lux’s courage and grace inspire others
Now more than a year post-transplant, Lux been hitting a lot of growth milestones and becoming stronger and more confident in himself. He’s also able to spend more time playing, exploring and being active. Like many 5-year-old boys, he’s happiest outside.
“He will need lifelong transplant care, but can go to school, graduate from grade and high school, get a job, marry,” added Dr. Bunchman.
“Lux’s journey has taught us resilience, faith and gratitude,” said Ciara. “Lux has faced challenges that many adults couldn’t imagine, and he handles them with courage and grace. I’m proud of how he still leads with joy, how he continues to blossom despite everything he’s been through, and how he inspires others without even trying.”