Gretchen’s Legacy
Gretchen was a vibrant 13 year-old girl who loved school, sports, reading fiction and hanging out with her friends. She was going to start high school and try out for the field hockey team in August 2023. She noticed that running straight, was somehow difficult for her during preseason practice. She felt like her left foot was weaker. That was the start of her real life nightmare.
The next 14 months were filled with doctor’s visits, medication side effects and daily radiation therapy for six weeks. All of this happened right at the start of school and all she wanted to do was be at school with her friends. Sometimes the loss of her normal life would make cry because she was not able to go to school and enjoy all the fun activities and normal stresses of school. While radiation helped her to go back to school for few weeks, she was never able to maintain her activity level, and she was limited by severe imbalance and falls.
She lost all her hair, which was devastating for a 13-year-old girl. From the first day of diagnosis, we knew her prognosis was terrible and we were given 9 to 12 months of expected time with her. She fought hard and was in two clinical trials with severe side effects. She had multiple ER visits and one long hospitalization. For the rest of her time, we tried to make memories with travel to Yosemite, Disney, Hawaii and Italy. The disease stole control of her body, and took a toll on her mental health. We saw her slowly lose her vitality and joy. The loneliness of battling this disease was so painful to watch for those who adored her. Gretchen passed away a month after she turned 15. While in hospice care, she decided she wanted to donate her brain to research. She confronted death as well as life bravely and with grace.
Our Donation Story
Gretchen passed away a month after she turned 15. While in hospice care, she decided she wanted to donate her brain to research. She confronted death as well as life bravely and with grace.