Resilience in the Face of NF2

My name is McKinnon Galloway, and at 31 years old, my life is a testament to resilience amidst adversity. Living with multiple disabilities, my journey took an unexpected turn at age 16 when I was diagnosed with neurofibromatosis type 2 (NF2), a rare and incurable genetic disorder that causes tumors to grow on nerves anywhere throughout the body, causing untold pain and complications.

From my teenage years onward, I've navigated a maze of medical treatments and surgeries, each one a battleground against the current or new tumors. At 16, I became a frequent flyer to the hospital for experimental chemotherapies and by 18, I was undergoing my first brain surgery. By the time I turned 21, I had already faced the scalpel twice, resulting in the loss of hearing in my right ear from a brain tumor on my hearing nerve. Birthdays, once joyous occasions, became reminders of my medical odyssey.

The Power of Advocacy

Yet, amidst the turmoil, I recognized the privilege of a childhood blissfully unaware of NF2's shadow. It was a realization born from my immersion in the NF2 community, where I witnessed the harrowing struggles of those diagnosed in childhood, their innocence stolen by the severity of their condition.

For nearly a decade, from ages 16 to 25, my life revolved around a relentless cycle of hospital visits, chemotherapy sessions, and surgeries, all while striving to excel academically. Yet, amidst the chaos, a beacon of purpose emerged when, at 25, I was elected national ambassador for the Children’s Tumor Foundation of NYC. It was a role that allowed me to amplify my voice, advocating for NF2 research and support on national and international platforms.

From Adversity to Innovation

As my NF2 progressed, so did the challenges. On New Year's Day 2022, I woke up completely deaf. My other tumor had finally compromised my other hearing nerve and my world was completely silenced. But I had no idea that my deafness would be my smallest worry over the next two years as I endured life-threatening brain surgeries, mimic strokes, partial body paralysis, full left side facial paralysis, eyes rotating inward, radiation and much more. Each setback tested my resolve, yet within the crucible of adversity, seeds of innovation sprouted.

A Vision of Inclusion

My mission extends beyond personal triumph to collective empowerment. I am committed to raising awareness for NF2 and providing support to those facing the challenges of adversity. I strive to create a world where individuals who are hard of hearing or deaf, especially those within hearing communities, are always included and supported. By dissolving barriers through innovation and understanding, I aim to make sure that no one is merely present in a room but truly part of the conversation. As the specter of hearing loss and other challenges associated with NF2 loom for many, I stand ready to offer my support. Together, we can build a world where the challenges of adversity are acknowledged and addressed, ensuring no one is left in silence.