Shay

A Dedicated Care Team Helps Keep Shay Healthy and Active  

For a while, 5-year-old Shay wanted to be a doctor for babies when she grew up. But these days, she’s all about the pizza. She might want to work at a pizza place or be a pizza maker.  

But, having to stick to a low-sodium diet that cuts out her favorite salty pizza has been one of the hardest things about living with kidney disease for Shay.  

“She’s had 18 inpatient stays at the hospital this year,” her dad Scott said. “At 5, I don’t think she fully understands all of this, she just knows that treatments are part of her life now and there are some things she can’t really do anymore.”  

The past year has been full of ups and downs for Shay and her family, but she’s a resilient kid who's taken everything in stride and is always ready for the next challenge. 

An unexplained rash 

Shay’s mom Madelyn first noticed what looked like bug bites down Shay’s bottom and legs at school, during her first weeks of pre-kindergarten. Madelyn works at Shay’s school, and promptly took her to the school nurse.  

“At first I thought she’d sat on an ant hill,” Madelyn said. “The nurse said the spots were really strange and that we should go to the pediatrician.” 

At the pediatrician’s office, they called in doctor after doctor. They ultimately diagnosed Shay with something Madelyn had never heard of and could barely pronounce: Henoch-Schönlein purpura (HSP).  

This rare condition happens when the immune system, which is supposed to protect you from infections, gets confused and starts attacking blood vessels in the skin, kidneys, joints and digestive tract. It causes red or purple spots on the skin and sometimes joint pain and kidney problems.   

“The doctors told us that it basically just runs its course,” Madelyn said. “Most kids are fine after a few weeks, although about 20% develop kidney issues. Unfortunately, Shay was in that 20%.”  

Her pediatrician did weekly urine tests to watch for any kidney problems. Just after Thanksgiving, they found blood in her urine. That’s when they first came to Children’s Health℠.   

“We thought this was just something we’d deal with for a few weeks and then move on,” Madelyn said. “I never considered how bad it might get and how quickly.”  

Treating patients, not diseases 

Shay's doctors on the Children's Health nephrology team hoped that the simplest treatment would slow down her kidney issues. 

“It became clear that the treatments that usually worked for other kids did not work for Shay,” Scott said. “Her doctors always told us ‘we treat patients, not diseases,’ and that we'd keep trying until we found what works for Shay, rather than what works for most kids.” 

Her kidney disease ultimately developed into IgA nephropathy, which causes swelling in the kidneys and can lead to other complications like high blood pressure and kidney failure. It was one of the most severe cases her doctors had ever seen.  

The treatment that finally turned the tables for Shay was dialysis, a treatment that helps remove fluid and waste from the body when the kidneys are unable to.  

“Before she got sick, all she ever wanted to do was kick a soccer ball,” Scott said. “Now, after starting dialysis almost a year later, she finally wants to do that again.”  

Something fun during hard times 

Shay’s medical journey is far from over. She’ll continue to receive dialysis treatments several days per week and will likely need a kidney transplant in a few years. But Shay’s parents are there for her through everything and are grateful to have an expert care team on their side.  

“Ashley on the dialysis team knows that Shay does better when she knows what to expect, so she makes sure to explain everything that’s coming,” Scott said.  

“She also is really good at keeping Shay entertained. They’ve recently started playing with slime and that’s really Shay’s jam. She loves anything messy,” Madelyn said.   

They hope that one day Shay will be able to spend less time receiving care and more time playing soccer and just being a kid. Until then, they’re grateful for their care team and the things that make the hospital a little more fun, like a therapy dog named Maze. Shay’s favorite thing is going to Seacrest Studios, a multimedia studio that helps kids explore media during their time in the hospital, and watching the TV shows they put on.  

“I think she’s learning to tell time by the Seacreast show. She’ll insist that we’re ready to watch the morning show at 10:00,” Madelyn laughed. “We’re grateful for the donors who support those programs to create a positive experience and fun things to look forward to while we’re dealing with hard times.”

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