Eldora teens to serve as co-Kid Captains for Iowa Homecoming Oct. 5

Eldora teens to serve as co-Kid Captains for Iowa Homecoming Oct. 5

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Rare genetic kidney disorder strikes siblings
Alex and Molly KirbyAlex and Molly Kirby, of Eldora, both have a genetic kidney disorder that has resulted in both of them receiving kidney transplants. The disorder was first discovered when Alex, 11 at the time, went to the doctor for a routine physical. Photo by Lisa Lewis.

In 2009, Amy Kirby took her 11-year-old son, Alex, to his local doctor for a routine physical. Nothing seemed out of the ordinary, but a few days later he was referred to University of Iowa Children’s Hospital—his blood work didn’t look quite right.

The Kirbys were shocked by the news: Alex’s kidney was failing. He needed a kidney transplant.


A video version of Amy's and Alex's story, courtesy of the UI Children's Hospital.

“We didn’t know he was sick because it was so gradual,” says Amy.

Alex started dialysis the very next day. Dialysis works the same way healthy kidneys would to filter out any toxins in the body. Since it takes 10 to 12 hours per day, Alex was able to receive dialysis at home.

Four months later, Alex was healthy enough to receive a new kidney and was put on the transplant list. Remarkably, just 10 days later, in November 2009, Alex received his transplant.

During the time of Alex’s diagnosis, his doctors were still unsure about what was causing his kidney failure. But after genetic testing, it was determined Alex had pediatric nephronophthisis, a rare kidney disorder found in children.

During that time, the Kirbys relied on pediatric nephrologistDr. Patrick Brophyto guide them.

Read about the fall 2013 UI Children's Hospital Kid Captain lineup.

“He was amazing at explaining everything to us,” Amy recalls. “He was in there for hours with us. I just couldn’t believe it. I mean, who does that?”

Because pediatric nephronophthisis is genetic, Amy had her two daughters tested for the disorder, as well. Although the disorder usually affects prepubescent children, it turned out that Alex’s sister, 15-year-old Molly, had it too.

Knowing what Molly would eventually have to go through, Alex was there to comfort his sister.

“He hugged her and said ‘It’s all right,’” Amy remembers. “And then he said, ‘I’ll show you where the best vending machine in the hospital is.’”

Molly joined her brother at his next appointment and had tests done, but all of her tests looked normal. The UI Children’s Hospital nephrology team knew eventually the disease would strike, so they monitored Molly closely.

Molly was eventually put on the transplant list in October 2011; the following April, she received her kidney transplant.

“It was really exciting when they finally called,” Amy says. “We cried, and then laughed, and then cried.”

Since their transplants, it has been smooth sailing for the Kirby siblings. Molly, 17, is looking at colleges, and Alex, 15, is beginning his sophomore year of high school. They take anti-rejection medication for their new kidneys and come back to UI Children’s Hospital every few months for check-ups.

Amy is thankful for how UI Children’s Hospital helped her children.

“Some of the best people I’ve ever met have been the physicians and nurses at UI Children’s Hospital,” Amy says. “They have just been amazing.

“To me, UI Children’s Hospital means a new life, new hope for a healthy future for my kids,” Amy adds.

To see other Kid Captain profiles, click here.

Contacts

Molly Rossiter, UI Health Care Marketing and Communications, (319) 356-7127

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