As Riley awaits a kidney, family learns fundraising

About 570 people in need of lifesaving transplants

To Las Vegas couple Krissy Lough and Jake Schlei, dialysis and doctors are just part of parenthood.

Both have become part of their routine since their son, 14-month-old Riley Schlei, was born with kidney damage that has since developed into endstage renal disease.

Though Riley deals with the doctors’ visits and daily dialysis like a little trooper, the stress of caring for him is heightened by the knowledge that his parents will soon have to find a way to pay for a kidney transplant and related costs to save his life, his tearful 28-year-old mother said recently in the family’s apartment.

“It’s very rough for any family, and we’re a very young family,” Lough said.

Their situation is hardly unique. In Nevada, roughly 570 people are in need of lifesaving transplants of all kinds. University Medical Center in Las Vegas is the only facility in the state that does transplants, focusing only on kidney transplants, according to the Nevada Donor Network.

Though Lough and Schlei both work and their son has health insurance, they’ve moved to a smaller home and given up their cats to help ease the financial burden of caring for Riley. Even so, they say, the cost of the surgery, postoperative care and future treatment will stretch their already strained finances to the breaking point.

COSTS MOUNT

Insurance will cover most of the hefty price tag for the surgery, which on average costs more than $334,000, according to the actuarial and consulting firm Milliman. But remaining out-of-pocket expenses will come on top of the many thousands of dollars they’ve already spent on special formulas, doctor’s appointments and prior surgeries.

And because the transplant will be performed at Lucile Packard Children’s Hospital Stanford in Palo Alto, California, Riley’s parents will have to come up with enough money to stay in the area for two to three months for postoperative checkups. And that’s if everything goes well.

That explains why they’ve adopted a strategy that has become increasingly popular among those facing the big financial burden of a medical crisis, taking to social media and

fundraising.

To Jake Schlei, 25, the surgery is the next step in the family’s journey, which began 18 weeks into Lough’s pregnancy, when they were referred to a specialist because something didn’t look quite right.

What turned out to be a blockage was wreaking havoc on Riley’s kidneys, and in the following weeks a physician suggested they either pursue an experimental fetal surgery in Colorado or terminate the pregnancy, the couple said.

‘THE RIGHT THING TO DO’

Unhappy with that answer, the couple got a second opinion from another physician, who instead recommended watching Riley’s development closely as well as other treatment methods that allowed Lough to carry him to nearly 40 weeks, far beyond the 28 weeks that another doctor had said was the upper limit. That provided a dose of hope that has kept his parents going.

“It really told us that it was the right thing to do,” Jake Schlei said.

Since then, however, Riley’s kidneys began to fail, and physicians at the Palo Alto hospital recommended a transplant. Though Lough’s mother appears to be a genetic match, costs have become a major factor.

Fortunately for Lough and Schlei and others facing the cost of an organ transplant, help is available.

Raising money via social media and local fundraising drives is an increasingly common way of paying for organ transplants, according to Rick Lofgren, CEO of the Indianabased nonprofit Children’s Organ Transplant Association (COTA).

Lofgren’s nonprofit association, which is helping Riley’s parents, collects the money raised by a volunteer team formed by the family.

HELPING FAMILIES BANK FUNDS

By keeping the funds separate from the family finances, parents don’t have to worry about affecting their eligibility for government or other assistance or having the money classified as taxable income, he said. And those who donate have the assurance that the money is used exclusively for medical purposes.

The organization also provides ideas and step-by-step instructions for fundraising efforts, which is the next step for Riley’s parents as they wait for Riley to walk and gain enough weight so he can undergo surgery.

“They’re waiting for a transplant and that’s a hard part of the reality of what we do,” Lofgren said.

So far, Riley’s family and supporters have raised more than $6,600 of their $75,000 target, and they’ve barely gotten started. They’re planning to hold events including a silent auction and benefit concert with local bands.

Lough said they may have to delay the transplant and keep Riley on dialysis if the fundraising effort lags, but they are determined to press on.

“This is a life-saving transplant so not doing this isn’t an option for our family,” she said. “We will do everything possible.”

CHRISTIAN K. LEE/LAS VEGAS REVIEW-JOURNAL @CHRISKLEE_JPEG Riley Schlei bites a table while his parents speak in their home on Wednesday. His parents are raising money for a kidney transplant for him. He has end-stage renal disease.

CHRISTIAN K. LEE/LAS VEGAS REVIEW-JOURNAL @CHRISKLEE_JPEG Jake Schlei, 25, right, plays with his son Riley Schlei in their home on Wednesday. Jake and his wife are raising money for a kidney transplant for Riley who has end-stage renal disease.