Emotional meeting between donor family and researcher drives home the importance of research donations
It was the last picture they took together as a family. Moments away from a liver transplant, Tim Anegon was laying on a hospital bed surrounded by his wife Coleen and daughters Courtney and Nicole.
A little more than three years later, Courtney gently holds the black and white photo set in a gold frame. She is sitting with her mom on the seventh floor of the University of Michigan Kellogg Eye Center, eagerly awaiting the moment they will meet Dr. Patrice Fort,the researcher who received Tim’s eye tissue to study diabetic eye disease.
Tim passed away four days after his operation. While the transplant was a success, he experienced complications during the surgery. Despite his family’s heartbreak, they never forgot that Tim’s liver transplant meant another family lost someone they love.
Coleen knew her husband would want to return the same generosity to someone else. They discovered Tim’s eye tissue was eligible for donation—and it was for research, not transplantation. Even though Coleen never doubted donation was the right choice, there was a sense of disappointment.
“It was really important to help somebody else when we donated,” Coleen said. “To us, it wasn’t enough.”
In August, the family’s story came full circle and forever changed their view of donation. Eversight arranged a meeting between the Anegons and Dr. Fort as part of its Hope and Healing program that celebrates the gift of donated eye tissue to research. Coleen and Courtney met one-on-one with the Kellogg researcher and toured his lab. They met the staff and spoke with specialists who were the last people to touch a part of Tim.
Most importantly, they discovered the significance of Tim’s donation.
“The Hope and Healing program gives families a chance to see the real impact of donating to research,” said Colleen Vrba, Eversight Research Programs Manager. “Knowing that your loved one’s donation is helping to find therapies and treatments for blinding eye diseases has a tremendous meaning for families.”
Dr. Fort partnered with Eversight for his project five years ago. With a detailed set of parameters in place, highly trained Eversight technicians recover tissue that allow his team to investigate specific questions related to diabetic retinopathy. Tim was not diabetic, but a key element of the study is comparing donors with diabetic retinopathy to those who do not have the complications. The investigation could lead to major breakthroughs. According to Dr. Fort, virtually every diabetic patient will have some type of retinal disease. Vision loss is gradual for some. For others, it’s complete blindness. The emotional meeting between Dr. Fort and the Anegon family bridged the gap between donation, research and the search for the causes and cures of blinding eye conditions.
“We didn’t understand the full impact of Tim’s donation,” Coleen said. “Now we realize what a legacy it truly is.”