A Father’s Love Provides a Gift for His Son and a Stranger

An East Bay 8-year-old will soon need a kidney transplant. His parents were told they’re incompatible to donate to him, but an innovative program allowed his father to help.

Alex Zwakman, 8, looks at life with joy and curiosity. Full of personality, he tackles everything with his playful sense of creativity—whether that’s building sandcastles on the beach or finding new ways to play with empty toy boxes.

But what probably impresses his parents the most is Alex’s resilience and strength.

“His life has been challenging,” says his father, Gregory. “For years, Alex had no health issues. Then, one day, he got sick, and we ended up in the hospital for a month trying to figure out what was wrong.”

At 3 years old, Alex was diagnosed with mitochondrial DNA deletion syndrome, which is a group of rare genetic disorders that limit the number of mitochondria in his cells and lead to various systemic issues. Mitochondria are the cells’ energy factories, and disorders affecting them can impair many of the body’s organs. For Alex, the main problem area is his kidneys. Currently, they’re functioning at 20% capacity, and he will likely need a kidney transplant in the future.

Soon after Alex’s diagnosis, Gregory and his wife got worse news: Neither of them was a match to donate to their son.

A voucher for peace of mind

Gerri James, RN, BSN, CCTC, Stanford Medicine Children’s Health Pediatric Kidney Transplant Program manager, brought the Zwakman family an alternative they had not heard of before: the National Kidney Registry Voucher Program.

“When we talk about ‘Do you have a donor?’ with potential kidney transplant patients, this option has become a part of our narrative,” James says.

The kidney voucher program not only allows someone to choose the most convenient time frame to donate a kidney to a stranger, but also provides a voucher for a loved one to claim later and be prioritized to receive a living donor kidney through the National Kidney Registry when they need a transplant.

“This really gives parents peace of mind,” explains Thomas Pham, MD, transplant surgeon at Stanford Medicine Children’s Health. “The idea that a parent who is donating can choose the time for their surgery is a big benefit. It allows parents to be at the bedside if or when their child needs surgery later on and fully care for them during their recovery.”

The flexible time frame helped alleviate some of the worries Alex’s parents had.

“The last thing we wanted to do was to have my wife and daughter at home with two people who are recovering from surgery,” he said. “This way, I’m fully healed, and I can also participate in caring for Alex after his surgery.”

The idea for a voucher program first came in 2014 from a grandfather in Los Angeles who wanted to help his grandson who didn’t immediately need a donation. He wondered whether there was a way to coordinate so that timing wouldn’t be an issue. The program enables someone to donate now before becoming ineligible because of advanced age or unexpected life events.

“You hear the history of the program and learn it was driven by love,” Zwakman says. “I was able to put myself in their shoes. These are people who are looking to do what’s right for their loved ones. The program has been thought through, and it was done by people who were in our situation.”

It was a big decision, but according to Zwakman, it was an easy one for his family.

“While there isn’t a guarantee, when Alex gets to the point where he needs a kidney, this approach puts him in the best position to have the best outcome or match for what he needs.”

“Team Alex” for a better future

After deciding to donate, Zwakman hit the ground running, going through the process of education and appointments to become a living donor. He was used to working with his son’s large group of specialty doctors, known affectionately to the Zwakman family as “Team Alex.” But this time, he was the patient.

The preparation helps the donor understand why they’re donating, Zwakman says. “By the time I was getting closer to surgery, I was on board and prepared both mentally and physically.”

Marilyn Morris, RN, Stanford Health Care donor coordinator, who has been coordinating vouchers at the adult hospital for the past four years, walked Zwakman through the process. Almost a year after he agreed to become a living donor, Dr. Pham performed his surgery this past January.

Now that he’s recovered, Zwakman is back to life as usual, which involves appointments with many members of Team Alex, including Gregory Enns, MD, director of Stanford Medicine Children’s Health’s Biochemical Genetics Program, and Elizabeth Talley, MD, pediatric nephrologist at Stanford Children’s. Though there are still some things that are unknown with Alex’s condition, Zwakman finds comfort in knowing that his actions have created a better future not only for his son, but also for another family.

“Ultimately, if Alex gets a new kidney and his life improves, I think about the overall sense of ‘Wow, we don’t have to do dialysis,’” he says. “I can kind of project myself into that family who received my kidney, whoever they are, and I hope they’re feeling that relief right now. But what makes it most hopeful is that Alex is in a position where in the future, we hopefully can feel that as well.”

To learn more about how to become a living donor, visit: https://www.stanfordchildrens.org/en/service/kidney-transplant/faq-donors