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Patient Profiles

Elyssa Jacobs

When 11-year-old Elyssa Jacobs was just 15-months-old, she contracted a virus that destroyed her heart. She was in the ICU at a Georgia hospital and deteriorating quickly. Around the same time, a little boy named Ian suffered a seizure and was pronounced brain dead at a hospital in Wisconsin.

“His parents made a decision I will forever be grateful for,” says Elyssa’s mother, Edie Jacobs, now of Rockwall, Texas. They decided to donate their son’s organs, and turns out the heart in little Ian’s chest was a perfect match for Elyssa.

Today, ten years after her January 1994 transplant, Elyssa’s mom says her daughter is enjoying every day and living for the moment. She loves jazz, tap dancing, playing the piano and swimming, especially at the beach; and like any typical kid her age, she really enjoys picking on her big sister, Lynsey.

Through October of 2003, the latest statistic available, 11,021 people gave the gift of life by becoming organ donors. According to the United Network for Organ Sharing (UNOS), the nonprofit that manages the nation’s transplant system under contract with the federal government, of those, hearts from 1,846 of them were transplantable.

While that number of donors sounds staggering, it’s actually pretty small when compared to the number of people on the national waiting list for an organ transplant. That number is almost 84,000.

To help raise awareness about the need for more donors, and to honor those who have already given the gift of life, UNOS decided to incorporate a donor memorial into its new headquarters building in Richmond, Va. Living donors, donor families and recipients worked together to make The National Donor Memorial a reality. Ground was broken in April 2003 during National Donate Life Month. The Memorial opened to the public in January 2004.

It features a 10,000-square-foot Memorial Garden that includes metaphorical rooms representing the emotional journey of hope, renewal and transformation that takes place during the organ donation and transplantation process. “As donor families pause, they can reflect on their grief and the loss of their loved one, and recipients can reflect on the enormity of the gift they received,” says UNOS Executive Director Walter Graham.

At the entrance to the memorial, guests find a wall of tears representing the initial stages of grief. Words such as "mother," "father," "sister," and "brother," representing all the people who have given the gift of life, project outwards from the stone wall. A slow stream of water cascades over the words, representing the tears of loss and joy that are experienced in donation and transplantation.

Next, visitors enter the deepest room -- the water garden. Here, an 11-foot concrete wall with the first names of organ donors sandblasted onto it runs the length of the room. A nearby fountain offers water as a metaphor for the "Gift of Life." Holly trees in a simple garden setting are featured in the grove. The water flowing through the space eventually forms a waterfall over the Gift of Life fountain in the garden below. The water's journey symbolizes the personal journey taken by those touched by organ donation and transplantation.

Inside the building is an interactive computer kiosk connected to the virtual National Donor Memorial. Even those who can’t physically visit the memorial site can be an important part of it. Anyone with access to the Internet can locate or submit tributes and pictures of their loved ones. Elyssa’s story is one of them.

"I sat down and wrote the tribute because I want everyone to know how precious the gift Ian and his family gave us really is,” says her mom. The day after Elyssa’s transplant, Edie Jacobs wrote a letter of thanks to the donor family’s parents. They finally met face to face two years ago.

Elyssa calls the scar on her chest her zipper and says when Ian went to heaven, he dropped a heart down for her. “I am so grateful to that little boy’s parents. Because his family took the time to think beyond their grief, we have been given the chance to watch Elyssa grow,” says Jacobs.

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