Meet Grayson, a ‘joy magnet’ of a toddler
2-year-old Grayson spends several days a week at Children’s Health undergoing treatment for a rare kidney condition. His family is grateful for a place where he’s always felt welcomed and loved.
A hospital isn’t home, but when a family has to spend several days a week at once, it says a lot when kids enjoy being there.
Grayson is one of those kids. His parents, Jordan and Jessica, wish he didn’t have to spend so much time in the hospital. But Grayson, who's been known to dance in the halls, has had no problem making himself feel right at home.
Grayson comes to Children’s Health and is loved by his doctors and his nurses. Everyone is waving to him and saying nice things to him. Someone called him a joy magnet once, and that’s something I’ve always used to describe him. He’s the happiest little guy, despite all he’s been through. And really, that’s all we care about.
— Jordan, Grayson's dad
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 another night at the hospital so physicians could monitor his oxygen. Although his levels were a little high while awake and a little low when 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 physicians ran some tests, they rushed the family to the Emergency Room at Children’s Medical Center Dallas.
In Dallas, physicians 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 Children’s Health Nephrology came to talk to them about a condition that affects the kidneys called nephrotic syndrome, which can be due to an infection — or genetic. A month later, a report confirmed it: Grayson had the less common, genetic type: congenital nephrotic syndrome.
Finding the right treatment for Grayson
Congenital nephrotic syndrome happens when damaged filters in the kidneys mistakenly filter out protein, which leaks into urine. This can lead to swelling, high blood pressure, poor growth and other serious health problems. Treatment involves making sure kids get proper nutrition and avoid dehydration and painful swelling. But the right combination of treatment can be hard to come by because the condition affects kids differently, and there’s not a lot of information or research.
Grayson's care team started him with medications designed to slow down his kidney function, but they weren’t effective enough to prevent fluid overload. So, they switched to Albumin and Lasix infusions (types of diuretic), which gave Grayson more relief. And for most of his time at Children’s Health, Grayson has been under the care of Elizabeth J. Brown, M.D., Pediatric Nephrologist at Children’s Health and Assistant Professor at UT Southwestern Medical Center.
Dr. Brown has been studying nephrotic syndrome for a long time and is active in a nephrotic syndrome organization. She also communicates really well, and we just really like her as a person.
— Jordan, Grayson's dad
Nephrotic syndrome is complex enough that Grayson sees not just Dr. Brown, but also an endocrinologist, a hematologist and a urologist. In June of 2025, the urology team removed one of Grayson’s hyper-filtering kidneys, which helped “tremendously.” But ultimately, Grayson will need dialysis and a kidney transplant.
“All of Grayson’s doctors meet regularly to talk about his care, which is so cool. And Grayson’s case may be used in classrooms at UT Southwestern to help future doctors better understand this rare condition,” Jessica said.
Valuing the consistency of care and a broad range of resources and services
Jordan and Jessica appreciate the holistic care that Children’s Health provides patients and families.
“We’ve received consistently good care at Children’s Health and Grayson is really happy there and that’s very valuable,” Jordan said.
The couple knows not all hospitals have child life specialists to help calm kids' anxieties during procedures; playrooms for kids to distract themselves between treatments; music therapy sessions to explore emotions through instruments and songs; social workers to connect them to additional resources; and a library where you can do your own medical research.
“Grayson loves the bright colors in the hospital and the playroom, where he gets to do arts and crafts and scavenger hunts. And he loves child life specialists, who let him pick out a toy when he’s facing a difficult procedure,” Jessica said.
For Jordan, who has taken charge of the financial and insurance piece of Grayson’s care, having both a social worker and a care coordinator to support him has been invaluable.
“There were times we weren’t sure if Grayson’s medications were going to get approved. But the care coordinators helped us figure it out – every single time – and found a way to make sure he got what he needed,” Jordan said.
The power of relationships and a big support system
Jordan and Jessica are thankful for the collaboration and expertise of Grayson’s multidisciplinary team of doctors. And, like many patients, they rave about the nurses.
“The nurses make us feel so comfortable,” Jordan said. “And they’re good people that we enjoy talking to who are interested in us as people, not just patients.”
Jessica recalls how they spent Grayson’s first birthday in the hospital.
“They set up the whole room, surprised us with balloons, a Happy Birthday sign and even a gift. It was so sweet,” Jessica said.
Care team members have celebrated some of Grayson’s earliest milestones such as learning how to walk, and Jordan and Jessica know they’ll be there for many more. They’re grateful for the hospital system’s vision to build the new Dallas pediatric campus, which will be one of the country’s largest and most transformative pediatric hospitals, to provide specialized care to kids like Grayson for generations to come.
We can’t thank the donors enough who are helping to make the expansion possible – because we know Grayson still faces many days in the hospital.
— Jordan, Grayson's dad
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