A Franklin Square family is searching for a donor for their son, who currently has Stage 4 kidney function and will need a new kidney within a year.
Elias Manolis, who turned 13 earlier this month, was born with a ureterovesical junction obstruction — a blockage between the kidney and the bladder. Until recently, his kidneys functioned at Stage 2 and Stage 3, terms used to describe the ability of the kidneys to regulate processes in the body. Their function has now worsened to Stage 4, which means they are moderately or severely damaged and not properly filtering waste from his blood.
Manolis has been a patient at Long Island Jewish Children’s Hospital, in New Hyde Park, since he was born.
“They’re like family,” his mother, Margaret Manolis, said of the hospital staff.
Elias takes seven medications in pill form, which helps maintain his bodily functions, like blood pressure and calcium levels. His mother also administers an injection once a week, which helps regulate his hemoglobin levels. The eighth-grader also has to catheterize four times a week because his bladder retains urine — something he’ll have to do for the rest of his life.
When he was younger, Elias visited a nephrologist — a kidney specialist — every six months. The frequency of his visits has since increased to once a month.
He is a student at H.F. Carey High School, where he is active in the Be a Buddy Club, whose members connect with autistic children, helping them with activities like drawing and playing games. Outside school, he loves playing videogames with his younger brother, Kosta. Elias also enjoys spending time outdoors, riding his bike and swimming.
As the family navigates his need for a new kidney, Libbie Binkiewicz, a Living Donor Ambassador for Northwell Health, is helping to guide them through the complex process. Binkiewicz explained that although the connotation of a transplant is a negative one, her team strives to provide its patients “a warm, friendly and positive” experience.
Potential donors will need updated bloodwork and to provide a record of annual appointments with their primary care providers.
“We try to make the process as streamlined as possible,” Binkiewicz said.
Following initial screenings, potential donors will undergo further observation, and will be provided more general information and be added to a mailing list. Prospective donors then meet with the transplant team: An abdominal surgeon, a nephrologist, a social worker and a nutritionist. Finally, a selection committee matches the best donor candidate to the patient in need of a transplant.
The Manolis family is looking for a donor with B-positive or O-positive blood, between ages 18 and 50. Donors can resume their normal lives within a month or so after the surgery.
Binkiewicz explained that although the eight different blood types present a challenge in matching candidates, “it does not mean the door is closed.”
As Elias ages and grows, his body has an increased demand for properly functioning kidneys, which adds urgency to the cause. Still, his mom said he remains optimistic.
“He’s a good boy,” Margaret said, “with a real battle to defeat.”
The Facebook page Kidney4Elias was created to help publicize his situation and raise awareness. There is also a GoFundMe account to help cover the expense of medical supplies, medications and doctors’ visits.
“We are holding onto hope, love, and the kindness of those around us,” Margaret Manolis wrote on the GoFundMe page. “From the bottom of our hearts, thank you for being part of our journey toward Elias’s healing and our family’s future.”
To donate or to learn more about the cause, visit Bit.ly/4nIypBb. For those interested in learning about the donor process, Binkiewicz can be reached at (516) 666-0899 or lbinkiewicz@northwell.edu.
