Gretchen’s life had taken an unexpected turn when she began experiencing symptoms of dizziness and unsteadiness, shortly before the start of 9th grade. A visit to the pediatrician led to a devastating diagnosis – Gretchen had a rare, incurable brain tumor known as diffuse intrinsic pontine glioma (DIPG). Over the next year, Gretchen underwent experimental therapies and bravely weathered the many side effects and the ups and downs of cancer care.
After her cancer continued to spread, Gretchen made the difficult decision to stop further treatment. Instead, she focused on her comfort and quality of life and on spending her remaining time with her family, friends, and beloved cats. A few weeks before she passed, Gretchen expressed a desire to help others, even in her passing-- she asked her parents, Dr. Jenny H. Kim and Dr. Francis L. Weng, about the possibility of organ and tissue donation.
“I think Gretchen had heard me talk about donation, as part of my work as a kidney transplant doctor”, said Dr. Weng, Chief of the Renal and Pancreas Transplant Division at Cooperman Barnabas Medical Center. “My wife and I feel strongly about choosing to donate and help others in any way we can, knowing that ‘you can’t take your organs and tissue with you.’”
On the day she passed, Gretchen was able to donate her corneas for transplant, and her brain tissue was also recovered for research. These lifesaving gifts were made possible by the powerful, longstanding partnerships among NJ Sharing Network, Eversight, Children's Hospital of Philadelphia (CHOP), and the Children’s Brain Tumor Network (CBTN) and its Swifty Foundation’s Gift from a Child Initiative (GFAC).
“The collaboration, compassion, and teamwork by all of the partner organizations was quite amazing. The process was seamless, despite the complicated logistics. I am so grateful that thanks to these efforts, Gretchen was able to help others – just as she wanted. It really means a lot to us, knowing that this terrible situation still led to some good,” said Dr. Weng.
NJ Sharing Network’s key partnership with Eversight changes lives every day by restoring sight and preventing blindness through the healing power of donation, transplantation and research.
“When I first got the call from NJ Sharing Network about Gretchen’s wishes, I knew my goal was to make the whole process seamless for her family,” said Ashley Vanderdonck, Clinical Partner Relations Director, Eversight. “I informed our Donation Support Center before her passing and all partners involved sprang into action when it was time to make her final gifts possible.”
“I'm incredibly proud of how well everyone worked together to ensure clear, timely communication and swift action in partnership with the Children’s Brain Tumor Network to honor Gretchen’s legacy and transform lives,” Vanderdonck said.
Gretchen’s left cornea was donated to a research project led by Ali Djalilian, MD, in Chicago. Her right cornea restored sight to a 1-year-old girl in Berkley, Mich.—a lifechanging gift for a toddler and her family.
Beth Frenkel, Clinical Research Project Manager at CHOP’s Center for Data-Driven Discovery in Biomedicine, echoed Dr. Weng’s sentiments in reflecting on how the partners quickly came together to support the Weng family.
“The gift of brain tissue is one of the most precious things someone can give because it can save lives. Our collaborative efforts that day not only ensured that Gretchen’s donations could occur, but also made sure it happened in the time frames that optimized her gifts. Most importantly, we all worked together to support Gretchen’s family,” said Frenkel.
Gretchen’s life journey, though brief, was marked by her courage and her commitment to making a positive difference. Her family hopes that Gretchen’s legacy lives on, through her gifts and the lives she has touched.
Editor’s note: Gretchen’s story was originally published in the Spring 2024 edition of NJ Sharing Network’s Circle of Life magazine.
