Sorin's story: How receiving his father’s kidney transformed his life

There’s never been a question that Sorin resembles his dad, Sean. They have the same smile, hands and fingers – and if you look at their baby pictures side by side, it’s hard to tell them apart.

But these days, Sorin has become more of a mini-Sean than he's ever been.

"There are so many new, crazy similarities – now that Sorin has one of his dad's kidneys inside his 4-year-old body." says Sharron, Sorin’s mom. "Sorin's body now runs hot, just like dad. He now loves stir fry and spicy mustard, two of his dad's favorites. He's also become very cheeky, just like Sean."

Whatever forces are at work, there’s no denying it: After his transplant, Sorin is a new kid, and more like his dad than ever.

Facing kidney failure at 4 months old

When 4-month-old Sorin was vomiting several times a day, the pediatrician thought it was acid reflux. When the vomiting continued for several weeks, Sharron took Sorin to the hospital. Doctors gave him Pedialyte and told Sharron to make sure he was having regular wet diapers.

That night Sorin's diaper was completely dry.

Panicked, she took her baby to the ER. The family was quickly transferred to a nearby hospital. "No one could figure out why he was so sick – and why his kidneys weren't working," says Sharron.

When a kidney biopsy showed crystals in his kidneys, doctors suspected a rare genetic condition called Primary Hyperoxaluria Type 1 (PH1). PH1 is characterized by a build-up in the body of a natural chemical called oxalate. People with PH1 lack the enzyme made in the liver that prevents our bodies from making too many oxalates. And having too many oxalates can cause serious damage to the kidneys – and other organs too.

Landing in Texas

Taking care of a very sick infant in kidney failure quickly became a 24/7 job for Sharron. Sean started looking for a new job somewhere close to a top-ranking nephrology program. Soon they were moving to Dallas, and taking Sorin to Children's Health℠.

"From nurses to Child Life – everybody has bonded with Sorin and made a true effort to not just take care of him, but to get to know him. And that’s been huge because he needed hemodialysis six days a week for four hours a day."

Three months after moving to Texas, Sharron found out she was pregnant – unexpectedly – with twin boys. Genetic testing revealed they both had PH1.

"It's no surprise that the first person I told I was pregnant – outside of my family – was Children’s Health Nurse Practitioner, Rhyan Brown," says Sharron. "She's been so supportive and has gone above and beyond to answer all my questions and always ease my fears."

Brown helped Sharron and Sean digest the news about the twins and prepare to welcome them to the world.

They worked with Sorin’s nephrologist, Raymond Quigley, M.D., Pediatric Nephrologist and Professor at UT Southwestern, to start the twins on medications to prevent oxalate build-up very soon after birth.

"It felt totally different to know and plan and be prepared for the twins' care. And so far, despite having PH1, they're showing no signs of kidney damage," says Sharron.

Deciding on a single organ transplant

Historically, kids with PH1 have needed both a new liver (that regulates the enzymes needed to prevent oxalate build-up) and a new kidney (to replace ones damaged by oxalate build up).

Because PH1 is so rare, Dr. Quigley tapped into a network of pediatric kidney experts across the country. They put their heads together about the best care plan for this rare disease – and decided to list Sorin for a liver transplant.

"For liver transplants, young kids need smaller, kid-sized donor livers. But for kidney transplants, we can use an adult kidney – from a living donor. We knew Sorin's dad was already a match for a kidney, so we just listed Sorin for a liver," says Dr. Quigley.

After waiting for a year and half on the liver transplant list, they needed to revisit their decision.

Despite near-daily dialysis, Sorin’s body still had too many oxalates, some of which had built up in his eyes.

"We wanted to stop the damage to his vision – and potential damage to other organs too," says Sharron.

Given how well Sorin’s brothers’ treatment with the medication Oxlumo had been working, the family and the team began to consider just doing a kidney transplant, with dad’s readily-available kidney.

"Oxlumo has now been proven to reduce oxalates by up to 70%. And we knew that having a healthy kidney would help clear Sorin’s body of excess oxalates. Plus, a few PH1 patients in France had done a kidney-only transplant, so it seemed a very reasonable option," says Dr. Quigley.

In June of 2024, Sorin had surgery to receive one of his dad's kidneys. And Sean underwent minimally invasive surgery, which makes surgery easier on donors and helps them recover faster.

A transplant miracle: Going from 10 words to full sentences

Post-transplant, Sorin has become a whole new kid. Living with kidney failure can cause anemia and nausea – and make kids feel very tired. It can also lead to abnormal brain development because of a buildup of toxins.

Pre-transplant, at almost 4 years old, Sorin was working with speech therapists at Children’s Health – because he only spoke about 10 words.

"The majority of Sorin’s limited words were the dialysis nurses' names because we spent so much time with them," chuckles Sharron. "But after the transplant, Sorin miraculously started speaking in full sentences. We were completely blown away."

Sean and Sharron are still in awe that Sorin is not just speaking, but now regularly joking – just like dad. He’s also eating his dad’s favorite cookies (Oreos), even though he refused all sweet foods pre-transplant. And they can’t help but smile when they see this new version of Sorin actively playing (and fighting) with his little brothers.

"Before transplant, Sorin would play for 10 to 20 minutes and need a break. Now, he spends all morning zooming around on our backyard racetrack with his little brothers," says Sharron.

Words of wisdom for other families or future living donors

Sharron's advice for families facing transplant or a very rare condition is: Find a team you trust, and don't be afraid to lean on them and to get all the facts before you make a decision.

"Our team at Children’s Health has always been open to all our concerns and questions and kept an open line of communication with us. And sometimes, we've come to a conclusion that was not the one we started with," says Sharron.

Sean's words of wisdom focus on helping to dispel the myth of what it means to become a living donor.

"People think that giving someone one of your two healthy kidneys will drastically change your own life. But other than eating healthier and drinking more water, my life has not changed," says Sean.

Become a living organ donor

Did you know you can donate a kidney, a piece of your liver and other organs and tissues while you’re still alive? Most living donors go on to live active, healthy lives – and many say they’d donate again because it was such a positive emotional experience. Learn more about how you could save a life by becoming a living donor.

Learn more

Learn more about our nationally-recognized pediatric nephrology program and our transplant team of expert surgeons who have performed more than 500 pediatric kidney transplants.