Raising money for the National Kidney Foundation
Eight-year-old Isabella Zigman, of Lewes, is a normal kid who happens to have a rare kidney disease.
“You get used to it,” she said nonchalantly.
On Sunday she’ll be in the Kidney Walk at Cape Henlopen State Park to raise money for the National Kidney Foundation, which works to raise awareness and supports kidney disease research.
“Izzy,” as she’s known to her friends and family, has nephrotic syndrome, a disease in which the kidneys release protein into urine rather keeping it in the blood. Untreated nephrotic syndrome leads to severe edema and eventual kidney failure. Only about two in 100,000 children are diagnosed with nephrotic syndrome each year.
It was edema that first indicated a problem.
As Christmas approached in 2014, she was 5 years old and gaining weight. Her parents brushed it off as a growth spurt. Then, they took a trip to Longwood Gardens and noticed Izzy got tired very quickly. The next morning, they woke up to find her body extremely swollen.
“We panicked,” said her mother, Tracy Zigman. “We raced to the pediatrician, thinking it was an allergic reaction.”
The doctor said the edema was being caused by either her kidneys or her liver and sent Izzy to A.I. Dupont Hospital for Children, where she was diagnosed with nephrotic syndrome, caused by minimal change disease.
People with minimal change disease have damaged glomeruli, which are the filtering units within the kidneys. Minimal change disease is idiopathic, meaning the cause is unknown, and there is no known cure. However, it is possible that Izzy could grow out of the disease, or that the severity of it could lessen as she gets older.
“It’s like your kidneys have a constant cold,” Izzy said.
Doctors started Izzy off on steroids immediately, which sufficiently stabilized her. Then, she started taking Cellcept, usually taken by organ transplant recipients.
“Izzy’s doing good now, but she is medication dependent,” said her mom, Tracy. “Cellcept really turned her life around. It’s been a wonderful drug for us.”
Doctors have attempted to wean Izzy off the drug several times without success, but will keep trying as she grows.
In the meantime, Izzy is busy living life. She is a third grader at Shields Elementary School, where her favorite subject is math. She likes to roller skate and skateboard and play lacrosse. She also enjoys art and experiments with making slime.
Over the past few years, Izzy’s Kidney Walk team has raised over $12,000, and will add to that this year. The walk begins at 11 a.m. Sunday. Visit here for more information.
You can donate to the National Kidney Foundation through Izzy’s team at http://donate.kidney.org/goto/TEAMIZZY.
“It’s a nice thing to do to help others,” she said. “And it helps find a cure.”
For Izzy’s mom, Tracy, awareness is key.
“Kidney disease disguises itself very well and it doesn’t discriminate. It’s not just certain ages or races, and it can really rock your world,” she said. “A urinalysis is an easy test that can be done in the doctor’s office. Encourage your doctor to think kidneys and probe them to take that extra step.”