Kidney patients 8 to 80 step off April 29 at Cape Henlopen State Park

Isabella “Izzy” Zigman of Lewes doesn’t let kidney disease slow her down.

The 8-year-old Shields Elementary third-grader plays lacrosse and basketball, and recently starred as a penguin in her school play, “Madagascar.” While being interviewed about her diagnosis, she zipped around the house on roller blades, stopping occasionally at the kitchen island for a bite of hummus.

Izzy was only 5  when she was diagnosed with nephrotic syndrome, minimal change disease.

“She started gaining a little weight, and we thought it was just a growth spurt,” said her mother, Tracy Zigman. “But within two weeks she needed new clothes.”

Just a few days before Christmas that year, Izzy awoke to a startling sight.

“Her face was all puffed up; her hands and feet were so swollen she looked like Fred Flintstone. We took her to the doctor, thinking it was an allergic reaction, and we were shocked when her pediatrician said it was her liver or kidney,” Tracy said.

A series of tests at A.I. duPont Hospital for Children confirmed her kidney disease. MCD is relatively rare, with only about 200,000 new cases diagnosed each year. Instead of filtering waste products out of the blood, kidneys affected by MCD flush protein out of the body through urine, and the waste products build up over time, causing swelling.

MCD has no known cause, and kidney disease does not run in the Zigman family. To manage the disease, Izzy was first prescribed Prednisone and Lasix, which caused her to gain another 40 pounds. She’s now taking Cellcept, at a cost of $1,200 a month.

“It’s a new drug, the same one given to organ transplant recipients,” Tracy said. “It has some side effects but the results have been phenomenal. Right now she’s on the least amount of drugs she’s ever been on.”

Izzy needs to watch her salt intake and can no longer eat dairy or processed meats. In the fall, her parents and doctors plan to wean her off her medications.

“We’ll sit and watch like a ticking time bomb and see what happens. It’s like cancer - you’re never fully healed and you don’t know if it will come back out of remission. We don’t know if she’ll need dialysis or a transplant. It’s a waiting game,” Tracy said.

The Zigman family has worked for several years to raise awareness and education of kidney disease through the National Kidney Foundation Walk, and to connect with other families whose children have MCD. Izzy will once again sell her hand-painted bookmarks at this year’s walk, with all proceeds to benefit the Southern Delaware Kidney Walk.

Because dialysis makes him tired and lethargic, Jess Quintero of Harbeson typically rests on the weekends. However, he’ll also join more than 600 people participating in the 10th annual walk Sunday, April 29, at Cape Henlopen State Park.

About 12 years ago, the U.S. Army and Air Force veteran was diagnosed with kidney cancer. A small tumor on his right kidney couldn’t be separated from the organ, so physicians removed his entire kidney. About four years ago, his remaining kidney started failing. For the past 3 1/2 years, Quintero has undergone dialysis every Monday, Wednesday and Friday for more than three hours a session while he looks for a compatible donor.

“The interpretation of the Affordable Care Act says the younger you are, you get the priority to receive an organ. There is an organ bank - United Network for Organ Sharing (UNOS) - they administer the program and decide who is supposed to get an organ and who is not,” Quintero said. “Older people have to get their own donor.”

Quintero will turn 80 in June.

“I want to see my grandchildren grow up,” he said.

Quintero is on both the UNOS and the U.S. Department of Veteran Affairs transplant waiting lists, and next month he travels to the University of Maryland Medical Center for an evaluation to determine his suitability for their transplant program. He’s unsure if he’ll qualify due to a recent heart condition that required an internal defibrillator be placed within his chest.

“My wife says I’m a bionic man,” he laughed.

All of Quintero’s family members have medical issues preventing them from donating their kidneys except one daughter who qualified as a perfect match.

“But she has four children, so I told her, ‘No way!’”

Quintero knew someone waiting for a transplant who underwent dialysis for 20 years before finally resigning herself to fate, but that won’t be him. He follows his doctors’ orders, takes his prescriptions regularly, eats protein-rich foods and hasn’t had an alcoholic drink or a cigarette in 55 years. He refuses to give up.

“I have a lot of faith. I don’t get down. My parents didn’t build me that way,” he said.

Participating in the Kidney Walk is free, but donations are appreciated. Registration for the walk is at 10 a.m. Sunday, April 29, and the walk begins at 11 a.m. The event also features entertainment, refreshments, a petting zoo, photo booth, interactive vendor booths and the Kidney Kids Corner with face painting and games.

More than 400 Delawareans are on the organ transplant waiting list, and nearly 2,200 are on dialysis. All walk proceeds will be used locally to expand patient services, education and research efforts. To register or donate, go to www.kidneywalk.org or call Nicole Scharf at 410-726-8732.