Robert Clan Will Walk for Cure
Incurable PKD Brings Family Tightly Together

By Dianne Willamson
Worchester Telegram
August 13, 2006

The Robert clan of Worcester is in many ways a typical American family.

Eric Robert, the eldest of five kids, is a married salesman with three children of his own. Another brother is an assistant school principal. Except for a sister who’s married to a doctor in Northampton, none of Eric’s grown siblings has strayed more than a mile from the home in which they were raised, just a stone’s throw from Newton Square.

They’re a close-knit bunch, and their odyssey has served to remind them that life’s trials often draw family together in special ways.

It began with Eric’s father, George Robert, an engineer who, in his early 50s, was diagnosed with a disease that would affect his life and the lives of his children and his children’s children. It’s called Polycystic Kidney Disease — PKD — and most of the 600,000 Americans afflicted with it eventually suffer kidney failure.

“We didn’t know that this disease was in our family,” said Eric, 47. “I was in my early 20s when my father was diagnosed, and I always remember him apologizing for it, apologizing for giving it to us.”

PKD is an inherited disorder, passed from one generation to the next by an affected parent, so that each child of someone with PKD has a 50 percent chance of inheriting the disease and its potentially life-threatening consequences.

George Robert underwent dialysis but died at age 61 from complications from PKD, which causes fluid-filled cysts to grow on the kidneys. Over time, the cysts get bigger and multiply, so the kidneys can grow to the size of a football. Most people with PKD must undergo either dialysis or a transplant, but there’s no treatment or cure.

Of George Robert’s five children, four would inherit PKD. Eric began suffering a few years ago from high blood pressure, one of the symptoms of PKD. He had an ultrasound and knew he was afflicted when the technician remarked on the many cysts covering his kidneys.

“I didn’t really know that much about PKD,” Eric said. “I had some more tests, and about three years ago the doctor started talking about a transplant.”

The natural donor, of course, would be the one sibling who was spared the disease. So Eric’s kid brother, Luke, was tested two years ago and was found to be a perfect match.

“It was pretty much assumed that Eric would need a kidney and that I’d be the one to give it to him,” said Luke, 43, assistant principal at Worcester Arts Magnet School. “In a sense, it was expected and taken for granted. It was like a joke, like, ‘Hey, Luke’s got one.’ ”

The jokes continued to fly as the brothers prepared for the transplant. One day, Luke confided to another brother, Matthew, that he was trying to stay healthy and that he hoped nothing happened to him before the transplant. His brother paused.

“Well, if something does happen, can I have your other kidney?” Matt asked.

A social worker met with the Roberts and questioned whether anyone minded that Eric would be getting the only healthy kidney in the family. The answer came quickly: no. He’s the one who needs it now.

The transplant was done last November at Massachusetts General Hospital. The six-hour surgery was a success, and later Luke and Eric shared a hospital room and talked late into the night, just like when they were kids. The rest of the family rallied around them. The surgery was more painful for Luke than it was for Eric, but Luke joked that he didn’t mind.

“Eric was my older brother and he tortured me growing up, so this was nothing,” Luke said.

Added Eric, “It’s an incredible thing to have your brother’s kidney inside you. If I knew Luke was going to do this, I probably would have treated him a lot better growing up.”

Eric was out of work for two months, but now feels great and his prognosis is excellent. His four other siblings who have PKD are healthy so far. But the disease doesn’t skip a generation, and Eric’s three children are well aware that they, too, may have the kidney disorder. So far, none of them has opted to undergo the blood test that can identity PKD.

“I don’t want to know,” said Eric’s oldest daughter Jennifer, 20, a junior at the College of the Holy Cross. “There’s no need to burden myself right now, because there’s nothing you can do.”

But there’s something else she can do. Next month, on Sept. 16, Jennifer and her Aunt Martha will serve as local coordinators for the Walk for PKD, which will begin at Blessed Sacrament Parish on Pleasant Street and include a one-mile walk and a 5K. Registration begins at 10 a.m. 

Needless to say, the entire Robert clan plans to participate in the walk — parents and brothers and husbands and wives and sisters and kids, all of whom have been touched by a terrible disease that has nonetheless helped remind them of what family is all about.

“We look out for each other,” Eric said simply. “I’ve been very fortunate.”

Added Jennifer, her eyes filled with tears, “My dad had this incredible opportunity to receive a kidney from his brother. Not everyone gets that chance. I might not get that chance. But I can do this, and I guess it’s my way of giving back.”