Zoe’s Journey: Strength, Advocacy, and Community Support
When Natalie welcomed her daughter Zoe in 2003, she imagined a healthy, sheltered childhood much like her own. Just two weeks later, Natalie’s husband was deployed with the military, and she began navigating motherhood largely on her own. What she never expected was to soon face the reality of childhood cancer.
At around nine months old, Natalie noticed something unusual in Zoe’s eyes. The whites had turned gray, and she felt instinctively that something was wrong. When she brought Zoe to the hospital, the doctor gently advised her not to search the internet or worry unnecessarily. He recognized what was happening and immediately referred her to a specialist, but he also understood that Natalie was alone while her husband was away on deployment. For Natalie, this moment stood out as one of the first real acts of compassion and community she experienced during the frightening early days of Zoe’s diagnosis.
Zoe was eventually diagnosed with bilateral retinoblastoma. Her left eye was enucleated quickly, and her right eye underwent rounds of radiation and chemotherapy. Over time, she endured numerous laser treatments and eye exams under anesthesia. The family traveled regularly from their home to Los Angeles for care under the late Dr. Murphree, while also receiving treatment at Phoenix Children’s Hospital. Despite the distance and the strain of repeated hospital visits, Natalie recalls the compassion of the doctors and staff who helped them through the most difficult moments.
The treatments left lasting effects. Zoe’s vision in her right eye measured 20/60 and for most of her life she was considered legally blind. She also underwent cataract surgery as a child, a result of the radiation. Early on, doctors told her she should expect her vision to fluctuate and possibly decline as she grew older. At times they even advised her not to consider driving. Yet Zoe persevered, adapting to her vision challenges and pushing boundaries with determination.
School presented its own obstacles. In Arizona, Zoe found limited resources and support for low vision, but when the family later moved to Alaska she met mentors who transformed her educational journey. Mr. Bailey, a teacher for the blind and visually impaired, became one of the most influential people in her life. He provided the tools, technology, and encouragement she needed to thrive, while also helping to remove the stigma Zoe sometimes felt when using adaptive equipment. His colleague, Ashley Walley, built on that foundation by empowering students to self-advocate. She encouraged them to create presentations for teachers, explaining their vision needs and accommodations in a way that was both practical and confidence-building.
Natalie pushed Zoe to advocate for herself from a very young age. She provided the tools and resources for Zoe to advocate for herself even when the challenges Zoe was facing were too overwhelming. At the beginning of every school year Zoe would teach her classmates about her cancer journey and why she had to use special equipment and about my prosthetic eye.
Zoe’s father says, Zoe was very resilient from such a young age. She was a fighter and always stayed positive and made friends wherever she went.
Today, Zoe is in her third year of a business and accounting degree at the University of Alaska Fairbanks. Her fiancé is pursuing a master’s degree in mechanical engineering, and continues to embrace her independence and future goals. Zoe’s vision has remained stronger than doctors once anticipated, and her story stands as a testament to perseverance and the power of advocacy.
For Natalie, the journey has also come full circle. With two children, including Zoe, she reflects on the importance of community and connection in navigating rare diseases. She is eager to reconnect with the retinoblastoma community and to support other parents who may find themselves on a similar path.
Zoe’s story is one of resilience, family strength, and the critical importance of early detection and ongoing support. By sharing their experiences, Natalie and Zoe are helping to raise awareness about retinoblastoma and reminding others that hope, resources, and community can make all the difference.
