When Jay and Lonni Mooreland of Folsom‚ Calif.‚ heard about the experimental epidermolysis bullosa (EB) treatment being developed at the University of Minnesota‚ they knew they wanted their infant daughter‚ Sarah‚ to have it.
They also knew the treatment would be risky. Only two other people had undergone the blood and marrow transplant (BMT) aimed at curing the devastating skin disease.
On top of that‚ 9-month-old Sarah had had some previous kidney and heart problems. But Jay and Lonni felt that the chance of curing Sarah’s EB was worth it. Without the transplant‚ there was a strong chance that Sarah would live a painful life and die of skin cancer in her teens or early 20s.
So the Moorelands moved their family across the country to Minnesota while doctors prepared Sarah for the BMT. But before she could receive the transplant‚ Sarah died from complications of the chemotherapy that preceded it. Doctors believe that her heart—while it appeared to be functioning well during tests—may have been predisposed to weakness because of her earlier heart problems‚ her parents say.
“While we are very saddened at her loss and sob daily for her‚ we felt the potential reward outweighed the risk‚” says Jay Mooreland. “We had to try—for her. If people don’t step forward and take the risk‚ doctors will never be able to improve upon their strategies.”
The Moorelands are taking another step to help University physician-researchers improve upon the EB therapy. They’ve created the Sarah Mooreland EB Fund to provide innovators John Wagner, M.D., and Jakub Tolar, M.D., Ph.D., with funding to continue their work.
So far‚ about 30 friends and family members have contributed $50‚000 to Sarah’s fund. Jay and Lonni themselves have given $28‚000 in Sarah’s honor.
“We know Sarah didn’t die in vain‚ but it helps to see how her death can influence others to donate‚” says Lonni. “Those donations help the doctors‚ which ultimately brings hope to other families where there wasn’t any before.”