Life Interrupted: A Volleyball Accident Unveils a Rare Genetic Battle
What began as a routine concussion check after a volleyball mishap transformed McKinnon Galloway’s life forever. At just 16, a seemingly minor head knock on the court led to a diagnosis that would redefine her future: neurofibromatosis type 2 (NF2), a rare genetic disorder. What started as the discovery of two brain tumours has since escalated, with Galloway now living with a total of 13 tumours scattered throughout her body – six in her spine, three on her hand, two in her neck, and two in her brain.
Her journey has been a relentless cycle of medical interventions, including four extensive brain surgeries. One of these life-saving procedures, while crucial, resulted in complete deafness. Despite these profound challenges, Galloway, now 33, has emerged as a powerful advocate, content creator, and speaker, dedicated to raising awareness and inspiring others facing the complexities of NF2.
The Shocking Diagnosis and its Immediate Aftermath
The incident that triggered Galloway’s diagnosis occurred during a volleyball game where she was a setter. A dive for the ball resulted in a hard impact with her head on the ground. This led to a precautionary MRI scan, which unearthed a diagnosis no teenager could anticipate. Doctors informed her that she had two brain tumours and warned her that she would likely lose her hearing by the time she graduated high school.
NF2 is a genetic condition that disrupts the body’s ability to control nerve growth. In individuals with NF2, a critical signal in their DNA, which normally tells nerves to stop growing, is absent. This results in tumours forming on nerve tissue. These growths can either press on vital structures, causing damage, or grow inwards, effectively shutting down the nerve. While initially told the tumours were slow-growing, a follow-up appointment just six months later revealed they had doubled in size, a stark indicator of the aggressive nature of her condition.
Navigating Experimental Treatments and Devastating Loss
The medical team immediately placed Galloway on Avastin, a drug originally developed for breast cancer, in an attempt to manage the tumour growth. At the age of 21, she enrolled in a pioneering phase one experimental trial. This trial involved gradually increasing doses of a new treatment until adverse reactions occurred, a testament to the desperate search for effective therapies.
The subsequent years were marked by four major brain surgeries. The cumulative impact of these procedures led to the loss of hearing in her right ear and a gradual deterioration of hearing in her left ear over a decade.
The emotional toll of Galloway’s diagnosis extended to her family. Her father, a successful businessman, struggled to cope with the reality of his daughter’s condition. Galloway recounted how his struggles with alcohol addiction would resurface with each piece of bad news regarding her health. Tragically, her father passed away at the age of 56, when McKinnon was 25, a devastating loss compounded by the ongoing challenges of her illness.
A Mother’s Strength and the Descent into Silence
In the face of her husband’s struggles and her daughter’s growing medical needs, Galloway’s mother, Tracy, stepped into a dual parental role. Her unwavering support was instrumental, and she actively championed the cause by becoming the chair of the board for the Children’s Tumor Foundation. Her tireless efforts in securing funding and advancing research have been credited by Galloway as being life-saving.
The year 2022 brought a new and profound challenge. On New Year’s Day, while on a family vacation in Russia, Galloway woke up to complete silence. Initially mistaking it for her mother having the TV on mute, the dawning realization that she had lost all hearing was a devastating blow. Steroids offered a temporary reprieve, restoring about twenty percent of her hearing in her left ear. However, a third brain surgery on March 18, 2022, intended to save her life, ultimately plunged her world into permanent silence.
A subsequent, more invasive brain surgery, performed to address severe complications that nearly cost her life, was a harrowing experience. In anticipation of the worst, Galloway chose “Somewhere Over the Rainbow,” a poignant tribute to her late father, as the last song she might ever hear. The ten-hour operation, however, went awry, leading to significant complications that necessitated a lengthy hospital stay.
Rebuilding Life in a Silent World
Emerging from the hospital into a world devoid of sound presented immense hurdles. The inability to communicate with her fiancé, family, and friends led to profound isolation for two years. This period of struggle was eventually alleviated by the discovery and adoption of assistive technologies that would dramatically improve her quality of life and her ability to connect with others.
Through her growing presence as an advocate and content creator, Galloway has become a vocal proponent of deaf technology, actively working to dismantle communication barriers and educate the public.
Her college sweetheart, Brandon, a mortgage broker, proposed on New Year’s Day 2023, during what was undoubtedly one of their most challenging periods of communication. He presented her with a sign that read, “Will you marry me?” as part of the proposal in Las Vegas.
Future Considerations and Enduring Hope
Planning a wedding presents unique challenges for the couple, particularly given Galloway’s balance issues, a common side effect of her condition. While a date is yet to be set, the prospect of walking down the aisle fills her with a mixture of excitement and anxiety about potential stumbles, but she remains determined to focus on the joy of the occasion rather than perfection.
The prospect of having children also comes with significant considerations. Galloway acknowledges that pregnancy can stimulate tumour growth, and there is a 50% chance of passing NF2 to her offspring, posing a potential danger to both mother and child.
Despite these complexities, a recent development has offered a significant glimmer of hope. Galloway shared that she has received her first stable scan in four years, a remarkable milestone after enduring 30 rounds of radiation and various chemotherapy treatments. This positive news marks a turning point, suggesting that her condition may be stabilising.
Her commitment to advocacy continues unabated. Through her personal platform and her involvement with organisations like the Children’s Tumor Foundation, where she has served as a national ambassador and helped raise millions, she strives to make a tangible difference. She has also taken her advocacy to the national stage, lobbying Congress in Washington, D.C., for increased federal funding and actively contributing to the pursuit of a cure.
Galloway reflects on her own experience, stating, “Diagnosed at 16, I was lucky enough to have my childhood. NF takes away the kids’ childhood and they deserve to have one, not in hospitals.” Her vision for the future is one where children affected by NF2 can experience the joys of childhood without the constant shadow of medical treatment.
Looking ahead, Galloway remains aware of the potential for tumour growth and vision loss, common complications associated with NF2. Yet, she maintains a remarkable perspective, asserting, “I’m honestly blessed to be on the other side so far — that can change quickly. For the worst luck, I have the best luck.” This sentiment underscores her resilience and her profound appreciation for the progress she has made, even amidst ongoing challenges.
