Seaford parents discuss transplants on twins

For most of their childhood, Seaford twins Alan and Brian Leavy have suffered from a rare disease that damaged their kidneys, limited their diets and left them unable to compete on their beloved St. Williams Sharks swimming team.

That prognosis changed when their father, Brian De Vale, gave a kidney to Alan last March. Three weeks ago, their mother, Evette Leavy, did the same for Brian during operations at NewYork-Presbyterian Hospital/Weill Cornell Medical Center in Manhattan.

At the hospital Wednesday, the 14-year-olds who will soon be freshmen at Seaford High School wanted to talk mainly about the junk food they crave.

Before his July 22 operation, Brian, who is recovering at home, said he was "tired all the time" and had an "aggravating diet" that kept him from eating food with the nutrients potassium or phosphorus, including chocolate, potatoes and tomatoes.

"Now I can eat whatever I want," said Brian - though he still must avoid grapefruit and pomegranates, which can interfere with his medication.

Since they were 5, the twins have had focal segmental glomerulosclerosis, which results in severe weight loss, kidney failure and shortened life span. Actor Gary Coleman had the same disease.

The disease is relatively rare for twins, said Dr. Sandip Kapur, the surgeon who transplanted the kidneys for both boys. It occurs in less than 10 percent of twins, he said, adding this was the first time in his 10 years of operating that he'd seen two parents give kidneys for their kids.

The teens are fortunate that their parents were a match. Once that was established, donating a kidney to each of their sons was simply an act of parental responsibility, said De Vale and Leavy.

"There was no question," said De Vale, a principal at P.S. 257 in Brooklyn. "We didn't wait at all. As soon as we kind of knew this was coming, it was just a matter of which one of us was going to go first."

De Vale went first. Complications from gestational diabetes she contracted during pregnancy forced Leavy to wait to rebuild her health. As Alan recovered, the doctor called last July to tell the family Brian's condition was also deteriorating.

Leavy was not surprised. The two had been close in just about everything so far in life, she said. They even had identical hernia surgeries a few years earlier. "In my heart I felt that it was something that was coming pretty soon," Leavy said.

Kapur said the transplant isn't a cure nor a guarantee the disease won't reappear, but it gives the boys a brighter future. A certain number of patients can suffer re-emergence of the disease, he said, "but it's hard to predict who that will be and for some it may not be an issue at all."

If Alan's prognosis is any indication - he has grown more than 8 inches and gained 45 pounds in the past 18 months - the future looks good. For now, De Vale and Leavy are just happy the process worked. "Now we are just looking for just a normal, relaxed lifestyle. It's not something that we dread anymore."