This Father’s Day, 9-year-old Jaren Munari of Maspeth, Queens, is feeling extra grateful for his dad, Stephen, a retired FDNY firefighter, who donated his left kidney to Jaren, allowing the boy to live like any other healthy growing child. Jaren underwent the successful kidney transplant surgery at Hassenfeld Children’s Hospital at NYU Langone on September 25, 2023. He’s now back to his favorite activities—riding his bike, building Lego projects, and attending school with his friends.

On Saturday, June 1, Jaren celebrated many milestones with his family, friends, and even a few members of his care team at “Jaren’s June Jamboree.” There was dancing, cake, and lots of laughter.

Laura Malaga-Dieguez, MD, PhD, medical director of the Pediatric Kidney Transplant Program and Pediatric Nephrology Program at Hassenfeld Children’s Hospital, has treated Jaren since early childhood.

“Jaren was born with a genetic syndrome called branchio-oto-renal (BOR) syndrome, a rare congenital disorder,” said Dr. Malaga-Dieguez. “In Jaren’s case, he was born with just one kidney that did not develop appropriately in the womb and wasn’t functioning properly. It was also discovered at birth that he was hard of hearing.”

What Is BOR Syndrome?

BOR syndrome is a disease that can result in deformations of the kidneys, neck, and ears. The condition may be inherited, but in Jaren’s case, the syndrome was due to a new genetic change which can happen naturally in the egg or the sperm that created his first cell. His parents underwent genetic testing with John G. Pappas, MD, director of Pediatric Clinical Genetics at Hassenfeld Children’s Hospital, which determined neither of them had the genetic change that Jared had.

Hearing aids can improve hearing impairment associated with BOR syndrome. Patients with kidney dysfunction may need dialysis or surgical interventions, such as a kidney transplant.

“BOR is a very rare disorder, maybe 1 in 40,000 babies worldwide are born with it,” said Dr. Malaga-Dieguez. “Jaren faces the world with so much energy and hope. He has been an inspiration for all of us.”

On May 8, 2015, Jaren was born prematurely at NYU Langone Hospital—Brooklyn, spending 11 days in the Neonatal Intensive Care Unit. His parents first learned of the rare syndrome and health challenges right before delivery. “Stephen was there every step of the way—singing to Jaren, holding him, and praying for him,” said Jaren’s mother, Donna Griebel. “If Stephen had the power to transfer all that ailed Jaren onto himself, he would’ve done it in a heartbeat.”

Jaren faced other challenges as he grew because of the BOR syndrome. He underwent surgery at NYU Langone in his first year of life to repair a congenital abnormality on the neck called branchial cleft fistulas. He also received a hearing aid to help with his hearing impairments. Daniel Jethanamest, MD, an otolaryngologist in the Department of Otolaryngology—Head and Neck Surgery at NYU Langone, has been caring for Jaren since infancy.

“Jaren’s hearing loss required early intervention, with ventilation tubes in both ears and amplification with a hearing aid in his right ear to improve function,” said Dr. Jethanamest.

As Jaren grew older, his kidney was no longer able to keep up. A few months leading up to the transplant, Jaren’s family noticed he was increasingly fatigued. His kidney disease also impacted his diet and limited the foods he could eat. “It was very difficult for Jaren to maintain a normal life. It was clear that we would have to seriously face the possibility of transplant in the near future,” said Donna Griebel.

Preemptive kidney transplant, or a transplant prior to the need for dialysis, spares children from dialysis and its associated potential complications. “The goal was to transplant Jaren before he grew sick enough to require dialysis,” said Rebecca Pellett Madan, MD, pediatric infectious disease specialist and medical director of pediatric solid-organ transplantation at Hassenfeld Children’s Hospital.

One Family, Two Surgeries

Jaren’s dad and now his kidney buddy, Stephen, explained that the testing process to become a donor was completely worth it. There was never a doubt in Stephen’s mind that when the time came to donate a kidney to his son, he would gladly do that. “It was a no-brainer,” said Stephen. “As a dad, I would do anything for Jaren to make sure he’s got the best shot at life.” And on Monday, September 25, 2023, Stephen gave Jaren the ultimate gift—a lifesaving kidney.

While a team led by transplant surgeon Bonnie E. Lonze, MD, PhD, associate professor, Department of Surgery, worked to remove Stephen’s left kidney, a surgical team led by Jonathan C. Berger, MD, surgical director of the Pediatric Kidney Transplant Program at Hassenfeld Children’s Hospital, prepared for Jaren’s surgery. The transplant required an experienced team of anesthesiologists, nurses, technicians, nephrologists, social workers, child life specialists, dieticians, pharmacists, and psychologists.

“Living donation is the fastest way to get an organ to a child who needs it,” said Dr. Berger. “Living kidney donation is the most common type of living donor transplant. People can live a normal life with only one kidney, because the remaining kidney will increase in size to compensate.”

While recovering in Hassenfeld Children’s Hospital’s Pediatric Intensive Care Unit (PICU), Jaren was able to get back to hobbies he loves. “Jaren enjoyed teaching himself to play songs on the piano from different movie and game soundtracks,” said Melissa Wasserman, MMT, a board-certified music therapist who provides music therapy to patients thanks to Sala Institute for Child and Family Centered Care. Elyssa Auerfeld, MS, CCLS, a certified child life specialist, has also been an integral part of Jaren’s care. “Elyssa has really gotten to know Jaren, putting him at ease and bringing him moments of joy during an otherwise challenging time,” said Donna.

Dad’s Gift of Life

Jaren is thriving with his new kidney, playing his first violin recital in May while also turning 9. The next month brought the celebration of his new kidney and a second chance at life.

“He’s like a new kid. He has endless energy. He’s been through so much, and you can’t tell at all today. It’s amazing,” said Stephen. “The entire care team at Hassenfeld Children’s Hospital at NYU Langone have been our rocks throughout this journey, and we can’t celebrate enough.”

Jaren has regular follow-up appointments with the nephrology team at Fink Children’s Ambulatory Care Center to ensure his new kidney is functioning well, but is expected to live a normal and healthy life. The FDNY Fire Family Transport Foundation provides the Munari family transportation to his appointments.

The Munaris plan on spending Father’s Day barbecuing with both of Jaren’s grandfathers and his 16-year-old brother, Joaquin.

Media Inquiries:

Katie Ullman
Phone: 646-483-3984
Kathryn.Ullman@NYUangone.org