Congenital nephrotic syndrome Finnish type

When Jamie and Stephanie Walley first met their adopted son, Timothy, he was a very sick 5-month-old who had been removed from his home in Mississippi and taken by that state’s Department of Human Services to the hospital. He had a feeding tube, was failing to thrive, and doctors said he would ultimately need a kidney transplant. The Walleys, who were first-time foster parents, listened carefully and then said, “It’s going to be a lot, but he’s ours, and we’re going to take him home.”
 
Timothy’s poor health was caused by congenital nephrotic syndrome Finnish type, a rare genetic condition of the kidney that begins early in development during pregnancy or within the first three months of life. Symptoms include protein in the urine, low blood protein levels, high cholesterol levels and swelling. The syndrome progresses rapidly to end-stage kidney disease. 
 
Over the next four years, the Walleys focused their efforts on simply maintaining Timothy’s health. But as his symptoms progressed, Jamie and Stephanie decided to seek care for Timothy from the Children’s of Alabama pediatric nephrology team. The team includes highly skilled physicians, specialized nurses, nutritionists, social workers and family counselors. “For the first time, we had a plan,” Stephanie said. “We had total trust and faith in the team. It was like we could finally breathe. We weren’t trying to navigate this by ourselves.” 
 
The ensuing months were filled with trips between Children’s and their home in Mississippi for appointments with Timothy’s team of care providers, along with many hospital stays as his symptoms worsened. In early 2020, Timothy underwent surgery to remove his severely damaged kidneys. He and Stephanie lived in Birmingham while he received hemodialysis at the Children’s renal care center, one of the largest comprehensive pediatric dialysis centers in the United States, to do the work of his kidneys. 
 
After eight weeks, he and his mom were able to return to Mississippi where he began undergoing peritoneal dialysis at home. Soon, however, the peritoneal dialysis began to fail, and Timothy was placed back on hemodialysis, undergoing the treatment five to six times a week at Children’s. To ease the strain of constant travel for treatment and to be close to his care team, Stephanie and Timothy again moved to Birmingham temporarily. After a transplant evaluation, Timothy’s name was added to the transplant registry.
 
In September 2020, the Walleys received the call they had been waiting for: Children’s renal transplant coordinator Cindy Richards, BSN, RN, CNN, CCTC, was on the line telling them a kidney was available for Timothy and instructing them to get to the hospital as soon as safely possible. “You wait for that moment, but it’s surreal when it happens,” Stephanie explained.
 
The surgery went smoothly, and Timothy was soon feeling better than ever. “It was like he had a new body, a fresh start,” Jamie said. “He’s done amazing ever since. He’s a totally different child, a totally different life.”
 
The Walleys continue to rely on Richards and the team as Timothy’s health steadily improves. The family has even permanently moved to the Birmingham area, trading their four-hour drive from Mississippi to Children’s for a less stressful 30-minute drive from Springville for Timothy’s regular follow-up appointments. 
 
Timothy is now an active, energetic 8-year-old who loves the Avengers, building with Legos, drawing, playing Roblox with friends, riding his bike, swimming and other outdoor adventures. His thoughts on the hurdles he has overcome on the road to good health reflect the goal of all the care providers at Children’s: “I’m finally a normal kid, like my friends.”