NEW YORK—When Brian de Vale and Evette Leavy learned that both of their twin sons would need a kidney transplant to combat a rare disease, they were prepared to donate one of their own organs to save their precious sons’ lives.

“There was no question. We did not wait at all [for a donor]. As soon as we knew this was coming, it was just a matter of which one of us was going to go first,” de Vale said.

But Leavy, who had gestational diabetes during her pregnancy, did not qualify as a fully-healthy donor. Thus, she adopted a strict regimen for a healthier lifestyle, proving to the doctors that she was at a reduced risk of developing Type 2 diabetes and a potential donor.

“I made a determination to make sure that I would be healthy when the time came for Brian's transplant,” Leavy said. She had to exercise everyday and stick to a healthier diet. “That's what I will continue to do because it's become a way of life for me. It's what I'm used to now and it was not a big sacrifice. It was just an adjustment to make sure I was healthy.”

On July 22, Leavy successfully transplanted one of her kidneys to her son Brian at the New York Presbyterian Hospital.

In March 2009, after their son Alan grew increasingly weakened from the renal failure disease, known as focal segmental glomerulosclerosis (FSGS), de Vale had first donated one of his kidneys to Alan. Shortly thereafter in July, doctors informed the family that Alan’s twin brother Brian would also need a transplant.

“Because they're twins and because their whole life, they have been pretty close in everything, they even had identical hernia surgeries at the same time years ago. So I knew that it would be coming. [In] my heart, I felt that it would be something that would be coming pretty soon,” Leavy said.

On Wednesday, the family reunited with the medical team at New York Presbyterian, Weill Cornell Medical Center to thank them for saving their sons’ lives. They also expressed their wish for more donors to come forward and help those in need of a transplant.

“The Leavy-de Vale story underlines the importance of organ donation,” Weill Cornell Chief Operating Officer Dr. Laura Forese noted. The hospital performs more organ transplants than any other institution in the country.

“In a broader sense, the fact that these two parents had to donate their kidneys highlights the continued fact that there is an organ shortage in this country and without living donation, these boys may not have survived,” said Dr. Sandip Kapur, the surgeon who performed the transplant surgery on the two brothers, both 14 years old.

A transplant from a living donor can last 2.5 times longer than one from a cadaver. Furthermore, Dr. Kapur noted that living donor transplants are “designed to protect the donor.” Donors undergo a thorough physical and “psycho-social” assessment to ensure that they are ready for the procedure.

“The single most limiting factor for people to come forward for [living] transplantations is lack of education, lack of awareness, and lack of the absolute facts,” Dr. Kapur said.

Julia Rivera, communications director from the New York Organ Donor Network, an organ procurement organization for those in the New York metropolitan area, said there are currently 107,000 people on the waiting list for organ transplants. Kidney donations are most needed here in New York and across the United States.

Rivera said, “It's a real desperate journey that every family who has … renal or organ failure in one of their members, has to go through. The biggest issue is that people are not donating when they pass [away].” She encouraged people to enroll in the New York state registry for organ donation, as these organs can save lives, especially when there are so many people in need of transplants. Those who are renewing their drivers licenses can always register, she said. There are currently 2 million enrolled in New York state.

Dr. Valerie Johnson, the twins’ nephrologist, said she has not seen this kind of case in her 25-year career. The twins have the genetic form of FSGS, which is very rare, she noted. It is even more uncommon for the identical twins to develop the same kidney disease.

Dr. David Serur, the medical director for the transplantation program at Weill Cornell, said that in most cases of this disease, only one of the twins would have the disease. SFGS causes loss of kidney function, resulting in protein in the urine. There is no cure, as the root cause of the disease is yet unknown.