Child’s short life leaves long, lasting legacy

When Sarah and Ross Gray’s twin son Thomas died in 2010 from anencephaly when he was only 6 days old, they donated his organs, eyes, tissue, and blood to research. 
“We just thought, this doesn’t have to be unproductive,” Sarah Gray says. “There was something we could do to make this more than just a tragedy.” 
Working with organ procurement organization Washington Regional Transplant Community, Thomas’ blood went to Duke University, his liver went to Cytonet, his corneas went to Harvard University, and his retinas went to Penn.
The Penn lab—the Genetic Diagnostic Laboratory, specifically—directed by Perelman School of Medicine Professor Arupa Ganguly, studies retinoblastoma, a deadly cancer of the retina that affects children.
“To understand the uncontrolled cell growth of cancer, we compare diseased eye tissue with healthy eye tissue,” explains Ganguly, who’s worked at Penn for more than 20 years. “We waited six years for a donation of a healthy young retina before Thomas.” 
A few years ago, the Grays made it their mission to track down how their son’s donations are contributing to research. Sarah Gray details the quest in her recently released book “A Life Everlasting,” which she will discuss at the Penn Bookstore at 6 p.m. on Wednesday, Oct. 19. 
They visited each lab that received Thomas’ donations, talking directly with researchers who held his liver in their hands and studied his cells under a microscope. The Grays, including their son Callum, Thomas’ twin, visited Ganguly’s lab on the boys’ fifth birthday last March. 
“We had talked on the phone a few times prior, so we were already comfortable with each other,” says Sarah Gray, talking of Ganguly. “We hugged a few times. She was so generous and open with us.”
The Grays saw the logbook from the day the Penn lab received Thomas’ retinas. As the 360th specimen the lab had received, it was assigned the number RES360. They also saw the FedEx envelope that the donation had arrived in. In a freezer in the lab, the Grays eyed the actual RNA that remains from Thomas’ retina tissue.
“Before I met Sarah, I was nervous and hesitant because I didn’t know how she was going to react,” says Ganguly. “I wasn’t sure if she would resent me because I benefited by having access to that sample. When I told this to her, she said, ‘Don’t ever say that,’ and continued that this process has given meaning and purpose to his brief life.”
Ganguly keeps a picture of Thomas, as well as Sarah, Ross, and Callum, and also their new baby girl Jocelyn in her office.
“I’ve gained a friend in Sarah,” Ganguly says. “Most of the donors have been anonymous, so it’s been exciting to make this connection. It’s also very gratifying that we can make our work so meaningful for the Grays.”
Through this process, Sarah Gray says she and her family have been reaffirmed that Thomas’ donation, and all the effort that went into it, has been worthwhile.
“I know that even though Thomas’ life was short, his legacy will be very long,” she says.
Thomas Gray