Molly Schuyler, 4, plays with her toys Wednesday, Sept. 7, 2022, in her family home in Bethlehem. Molly was born with congenital nephrotic syndrome, a disorder that typically leads to irreversible kidney failure. Thanks to the National Kidney Registry, she was able to get a new kidney to replace her failing one. (April Gamiz/The Morning Call)

Thanks to the new kidney she got in March, Molly Schuyler has had plenty of opportunities to do the things she loves — sing, color, play with her friends and go to the park.

The talkative and independent 4-year-old girl and her older brother, Benjamin Schuyler, were born with congenital nephrotic syndrome, an inherited illness that usually leads to kidney failure and sometimes death at a very early age. Their mother, Stephanie Schuyler, said Molly spent a good deal of her young life in the hospital or on dialysis because of how early her kidneys began to fail.

“Molly hated dialysis; she was very, very unhappy, she’d disconnect herself,” Stephanie Schuyler said. “Every morning, she would wake up feeling really, really crummy and tired. Prior to the transplant, she had lots of really sick ICU stays because of all the fluid from her kidney disease. So Molly missed out on a lot of normal things like having birthday parties and getting to see her friends.”

When the Bethlehem native needed a new kidney to replace her failing one, a family friend offered his. But her willing donor’s organ was incompatible with her body.

Had it not been for Children’s Hospital of Philadelphia’s partnership with the National Kidney Registry, an organization that matches and facilitates living donor transplants, Molly could have waited several more years for a suitable replacement kidney. But because the family friend donated his kidney on behalf of Molly, the NKR used its massive network to track down a compatible kidney for Molly.

The NKR connects people who need kidneys to matching organs from donors all over the country. It can significantly speed up the process if a friend or family member is willing to donate one of their kidneys. Roughly 20% of kidney donations in the U.S. are expected to be facilitated by the organization this year.

Michael Lollo, chief operating officer for the NKR, said most hospitals that do transplants have their own internal programs that match transplant recipients with compatible donated organs but NKR’s size means there is a much better chance of finding an organ quickly. The NKR has partnerships with 103 hospital transplant centers across the U.S., including eight in Pennsylvania.

Lollo added that the NKR protects donors during and after the process through its Donor Shield program, which helps donors with lost wages, travel expenses and even transplants should their remaining kidney fail. And there is a family voucher program where NKR donors can designate up to five family members. Those who have these family vouchers will be fast-tracked in the kidney search.

Schuyler said even with the priority given to Molly, it took about a year after their friend’s donation surgery to get a match. That kind of wait is much shorter than the three-to-five years most transplant recipients have to wait.

Now Molly has a kidney that will probably last until she is in her late teens. Instead of dialysis she just has to take medications to prevent her body from rejecting her new organ.

“Prior to transplant Molly wasn’t able to eat at all,” Schuyler said. “She had terrible reflux and would just vomit everything. So everything was by her feeding tube and if she were to drink anything, it was just formula. But now Molly eats absolutely everything from hamburgers to chicken nuggets. Her favorite food is broccoli.”

Dr. Matthew Levine, director of CHOP’s transplant center, said the University of Pennsylvania Health System has had a partnership with the NKR for about seven years but CHOP only began working directly with the NKR about two years ago. Molly is CHOP’S third patient to get a kidney through the NKR.

Levine added the NKR partnership is a huge benefit for patients, but there are about 90,000 people in the U.S. who are waiting for a kidney donation, according to Donate Life America.

One of those still waiting for a matching kidney is Molly’s brother, Benjamin, 5. He’s been on dialysis for three years, but because he is deaf, visually impaired, can’t walk and can’t speak, Stephanie Schuyler said she didn’t realize how hard it was to be a child on dialysis until Molly went through it.

“He’s the sweetest, sweetest little boy ever. He never cries, never complains, always smiles, he’s the happiest, little chubbawubba on the planet, but he is still on dialysis every night,” Schuyler said. “We pray that Benjamin gets a kidney soon.”

Levine said for people with kidney problems a transplant is a much better option than dialysis. It is time-consuming and exhausting for patients and long-term dialysis can cause problems with the heart and blood vessels. He added that for children, dialysis can have a negative impact on their physical and mental growth and development.

But even if they can get a kidney to replace their failing ones, Levine said people like Molly or Benjamin will likely need two to four kidney transplants over the course of their lives. .

However, Lollo said most people don’t realize how easy it can be to donate a kidney or how little of an impact it will have on their lives. Lollo is a kidney donor himself. In 2018, while he was still a detective with the New York Police Department, he donated one of his kidneys to a stranger.

Lollo attempted to donate to an officer in the NYPD and then to a man who had a billboard requesting a kidney, but in both cases he was told his kidney wasn’t a match. He then decided he would find a way to make sure someone who needed it got one of his kidneys.

“Every single person that I’ve ever spoken to and we’ve spoken to hundreds and hundreds of them, they all say the same thing — there was some “a ha” moment, I call like the light switch,” Lollo said. “I hate to say it was an easy process but honestly, it was a fairly easy process. I knew there was going to be some slight discomfort to myself, but I thought there is someone’s life that I can change and how often do you get to do that while you’re alive?”

Lollo said the surgery to remove his kidney took about two hours and he only spent about two days in the hospital.Donors are able to return to work after one to six weeks depending on how physically strenuous their job is.

“A guy I know donated — he is an accountant. A week and a half later, he was back on his laptop on his couch doing work and sending emails,” Lollo said.

A few years have gone by but Lollo said having only one kidney has made no real impact on his life. Lollo added if done through the NKR the process costs donors absolutely nothing at most hospitals and the organization will also provide travel, lodging and lost wage reimbursement.

He said anyone who wants to donate can do so by contacting any of the transplant center hospitals NKR has partnered with and begin the process by going to the hospital’s website or contacting them directly. Those who are looking for more information about donating can go to NKR’s website.

Morning Call reporter Leif Greiss can be reached at 610-679-4028 or lgreiss@mcall.com.