Grayson’s story: On becoming a “joy magnet” despite a complex diagnosis

Grayson is a 2-year-old who likes to dance his way down the hospital hallways. He’s also made dozens of crafts, gone on scavenger hunts, learned to play musical instruments and celebrated birthdays – all within the hospital’s colorful walls.

Grayson’s parents lovingly refer to their toddler as a “joy magnet.”

They’re in awe that he greets each day and each person with a smile – despite the rare, serious kidney condition he was born with.

A difficult, rare diagnosis

When Jessica and Jordan were expecting their first child, everything from the pregnancy to birth “went just about perfectly.”

Then, as they prepared to take Grayson home, they noticed he was breathing a little rapidly. His family stayed at the hospital another night so his doctors could monitor his oxygen. Although his levels were normal while he was awake and a little low while he was sleeping, they couldn’t find anything wrong. So they sent the family home.

At home, as a new mom, Jessica was diligent about checking baby Grayson’s oxygen levels. When they dropped to 89, she knew it was time to head to Children’s Medical Center Plano. After doctors there ran some tests, Grayson was put in an ambulance to go to the Level IV Emergency Room at Children’s Medical Center Dallas.

In Dallas, doctors ran more tests to rule out problems with Grayson’s heart and brain – and structural problems with his kidneys and lungs. Then, a few days later, Grayson’s eyes and face got puffy, and they found protein in his urine.

That’s when the team from Children’s Health Pediatric Nephrology came to talk to Jordan and Jessica about a condition that affects the kidneys called nephrotic syndrome. A month later, a genetic report confirmed that Grayson had congenital nephrotic syndrome.

Treating a difficult disease

Congenital nephrotic syndrome develops in the first three months after birth when genetic mutations cause the kidneys to mistakenly filter out protein. This loss of protein leads to swelling, poor growth and nutrition, blood clots and infections.

“There’s no cure for congenital nephrotic syndrome,” says Elizabeth J. Brown, M.D., Pediatric Nephrologist at Children’s Health and Assistant Professor at UT Southwestern. “Initial treatment involves making sure kids get proper nutrition to grow well, and that they avoid dehydration and excessive swelling.”

Grayson's care team gave him infusions three times a week to help control protein loss. The infusions decreased his swelling, but they did not significantly improve his growth. He also developed a blood clot and multiple infections, all of which required treatment in the hospital.

In spite of a lot of supportive care, the care team knew Grayson would develop kidney failure.

“We decided to first try and remove just one of his two overactive, hyper-filtering kidneys,” Dr. Brown. “And that did decrease protein loss. But still, Grayson was not growing enough.”

So Dr. Brown and members of Grayson’s multidisciplinary care team began discussing the risks and benefits of removing his second kidney to prepare him for a kidney transplant – before he was in full kidney failure.

“Treatment decisions for kids with congenital nephrotic syndrome are not clear cut. Grayson’s parents have worked very closely with our team and they ask a lot of thoughtful and well-researched questions,” says Dr. Brown. “And we appreciate that – because it’s so important for the family and the medical team to be on the same page.”

Preparing for transplant

In February of 2026, the team removed Grayson’s other kidney and started him on hemodialysis six days a week to take over the very important job of the kidneys – filtering the blood and removing excess water.

His care team is doing everything they can to help Grayson and his family prepare for a kidney transplant.

“Grayson already has multiple family members who are being evaluated to be a kidney donor for him,” says Dr. Brown. “And he’s adjusted very well to dialysis. He chats up all the nurses and walks himself over to the scale to get weighed after treatment.”

Now that his kidneys aren't filtering out important proteins, Grayson has started walking and getting into things like a typical toddler, which has also helped his language skills.

Dr. Brown has noticed how much Grayson enjoys spending time in the library at the hospital before or after he receives dialysis.

“Grayson just wants to play and explore all day now,” says Jessica.

Being seen as people, not just patients

Jordan and Jessica are so thankful for the genuine care they’ve experienced from everyone at Children’s Health, including the nurses.

Receiving consistent, holistic care has been vital for Grayson’s family.

“We’ve had a lot of family telling us we should try this doctor or this other hospital, but we’ve had consistently good care at Children’s Health and Grayson is very happy and comfortable here – and that’s incredibly valuable,” says Jordan. “And we know Grayson will be in good hands when he’s ready for his kidney transplant.”

Learn more

The Nephrology Department at Children’s Health is ranked among the top pediatric programs in the nation for kidney care and has performed hundreds of successful kidney transplants. We offer expert care for children with all types of kidney diseases, including the rarest kidney conditions.