How One Family Turned a Negative Into a Positive

Published on 
June 23, 2020
Categories: 

  • CHLA-Imagine-2020-Summer-NegativeIntoPositive-01.jpg
    From left to right: Elisa, Amanda, Gabriel, Shelby and Michael Schenkman
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    Gabe recovered from his transplant surgery with his mom at his bedside.
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    Elisa and Michael Schenkman

By Eunice Oh
 

After their son was diagnosed with kidney disease, Elisa and Michael Schenkman channeled their energy into finding a cure. Over the last decade, they have raised $8 million to support research at CHLA—and their efforts are paying off.

A punch to the gut.

That’s what Michael Schenkman says he felt when he was told his newborn son had kidney disease. Just a week earlier, he and his wife, Elisa, had brought home a healthy set of twins, a boy and a girl. Now doctors were talking about renal failure and the need for a future kidney transplant for their 9-day-old son.

“It’s like having the wind knocked out of you,” says Michael. “You can’t breathe.”

While the Schenkmans’ infant daughter was fine, their son, Gabriel, hadn’t been eating properly and was constantly crying. A trip to a local emergency room yielded few answers other than the need for Gabe to stay hydrated. So the next day, Elisa and Michael took him to their pediatrician.

“After drawing his blood, she came back and said, ‘Gabe’s about to go into cardiac arrest. We have to go right now,’” recalls Elisa. “She initially called an ambulance, but canceled it and just grabbed him, and we ran out of her office with Gabe in her arms.”

Gabe was stabilized at a nearby hospital, and the family was eventually referred to Carl Grushkin, MD, Head of the Division of Nephrology at Children’s Hospital Los Angeles, who had trained Gabe’s pediatrician.

‘We need to help’

For Elisa and Michael, the most difficult part about Gabe’s diagnosis was the uncertainty. They knew he would need a kidney transplant, but they didn’t know when. It could be when he was 2 years old or 20—it depended on how long his kidneys continued to function. But they trusted Dr. Grushkin, a leading expert on transplantation and renal disorders, and were confident in the care their son was receiving.

“Once you walk into Children’s Hospital Los Angeles, it’s hard to ever go anywhere else,” says Elisa. “Every single person who works there has a heart of gold.”

The Schenkmans felt compelled to give back, especially after they learned that funding for kidney disease and much needed research pales in comparison to other pediatric illnesses. “It’s not a condition that gets a lot of attention,” says Elisa. “So we said, ‘OK, we need to help.’”

In 2006, the couple started a letter campaign to their network of friends, family and business associates asking them to support CHLA’s Division of Nephrology. The donations began coming in, and Elisa and Michael decided to create a fund for renal research called GOFARR.

Their efforts soon turned into a family affair. The Schenkmans’ eldest child, Shelby, wanted to pitch in and set up a lemonade stand. Later, Gabe’s twin sister, Amanda, approached her parents with an idea to host an annual event that would help raise funds while also increasing awareness about kidney disease. Now in its fifth year, the GOFARR FunFest has become the family’s signature fundraising event, combining a bowling party, silent auction and food truck extravaganza all in one.

To date, the Schenkmans have raised an astounding $8.1 million. “Our friends, family and Michael’s business associates have really rallied behind us,” says Elisa. “We wouldn’t be here if it wasn’t for them.”

Revolutionary research

While some of the money raised has gone toward renovating the Dialysis Center at CHLA and supplying gifts for hospitalized patients during the holidays, most of the funds have supported the GOFARR Laboratory for Organ Regenerative Research and Cell Therapeutics in Urology. The lab, led by co-Directors Roger De Filippo, MD, and Laura Perin, PhD, focuses on developing stem cell-based techniques to combat and potentially prevent conditions such as chronic kidney disease.

Thanks to the Schenkman family’s fundraising, the lab has been able to grow its team—which currently stands at 10 scientists—and pursue investigations that are making a significant impact in the field of kidney disease research.

In one groundbreaking study, the GOFARR team developed the first physiologically accurate in-vitro model of the human kidney glomerulus, which acts as the organ’s filtration system. Derived from human cells, GOFARR’s model provides a more accurate way to examine how kidney disease affects individual patients and to monitor the disease’s progression over time.

This pioneering work was featured in the prestigious scientific journal Nature Communications in 2019 and has the potential to improve the lives of an estimated 40 million American adults and children who have chronic kidney disease.

“What’s exciting is that the money GOFARR donors have given has essentially become seed money that is now bearing fruit,” says Michael.

According to GOFARR Lab leaders, those outcomes are a direct effect of the Schenkmans’ support. “Their partnership has been invaluable and is the driving force behind our ability to advance renal research,” says Dr. Perin.

Hope for other families

A few years ago, the Schenkmans received a call from Dr. Grushkin. He had the results of Gabe’s latest bloodwork, which indicated it was time to consider a transplant. After some testing, it turned out Elisa was a strong donor match. Five days before Gabe’s 15th birthday, Elisa gave life to her son for the second time: She was wheeled into surgery at USC’s Keck Medical Center, where one of her kidneys was removed and then transported to CHLA to be given to her son.

“For me, it was incredibly emotional,” Elisa says about the donation. “I would give another kidney away if I could. I would donate to any child in need of one.”

Today, Gabe, 18, is thriving and getting ready to start college at the University of Texas at Austin. His parents know that a transplant isn’t a complete cure-all, but they are optimistic.

“We don’t know what the future holds. We could be in the middle of Gabe’s journey right now, or maybe just at the beginning,” says Michael. “What we do believe is that the GOFARR Lab will continue to generate amazing results. Our hope is that the research will have an impact on Gabe’s life and the lives of other children down the road.”

Children’s Hospital Los Angeles became an even more integral part of the Schenkmans’ lives last year when Elisa and Michael joined the CHLA Foundation Board of Trustees. As members, they are committed to promoting CHLA’s mission and, above all, providing hope to other families.

“There’s this great balance that happens at Children’s Hospital Los Angeles between clinical care and cutting-edge research that you don’t find at many hospitals,” says Michael. “This unique duality attracts brilliant doctors and researchers who are committed to making children’s lives better.

“Even though our journey started out with devastation,” he adds, “surrounded by caring and amazing doctors, scientists, friends and family, we had the passion and fortitude to turn a negative into a positive.” CHLA-Imagine-2016-Butterfly-Icon.png

How you can help

To help support Children's Hospital Los Angeles, please visit CHLA.org/Donate.