A woman says a volleyball accident revealed a rare genetic condition that leaves her with 13 tumors.
McKinnon Galloway, 33, found out she has neurofibromatosis type 2 (NF2) at the age of 16 — after a fall led to a routine concussion check.
What started as two brain tumors quickly multiplied.
Today, Galloway lives with 13 tumors throughout her body – six in her spine, three on her hand, two in her neck, and two in her brain.
She has undergone four brain surgeries – one which left her completely deaf after a life-saving brain surgery – and experimental treatments.
Now a content creator, speaker, and advocate for NF2 patients, Galloway, from North Carolina, continues raising awareness and inspiring families.
“When I was 16, I played volleyball and I was a setter,” Galloway said. “I went for a dive and hit my head on the ground. So I went in for a routine MRI.”
Galloway’s journey with NF2 began at 16 with a shocking diagnosis that would reshape her entire life.
“You have two brain tumors. You’re going to go deaf by the time you graduate high school,” doctors told Galloway after what should have been a routine concussion check.
The rare genetic disorder means she’s missing a signal in her DNA that tells nerves to stop growing, causing tumors to grow outward, press on vital structures, or inward, shutting the nerve down.
The doctors told her they were slow growing — six months later after a follow-up appointment, they grew by 100%.
She was immediately put on Avastin, a repurposed breast cancer drug.
At 21, she entered a phase one experimental trial, out of rats into humans, where researchers kept increasing doses until she had adverse reactions.
Four brain surgeries followed, with her losing hearing in her right ear and gradually losing hearing in her left ear over ten years.
Her father, Mark, a successful business owner, couldn’t cope with his daughter’s diagnosis.
“My father started drinking,” Galloway, from Charlotte, said.
“Every time I had a hearing test that went down or growth in my tumors or anything like that, he would relapse.”
Her dad took his own life at 56 when McKinnon was 25.
Galloway has 35-year-old brother in the military. Her mother, Tracy, 62, stepped up in extraordinary ways.
“My mom stepped in and took both parent roles,” Galloway said.
“She became the chair of the board of the Children’s Tumor Foundation out of New York City to help and secure as much funding, research, and everything else as she could. So she really saved my life in a lot of ways.”
In 2022, Galloway’s world went completely silent.
“On New Year’s Day of 2022, I woke up on a family vacation in Russia completely deaf. I was like, ‘That’s nice. My mom has the TV on silent. That’s really nice of her.’
“And then I sat up, and I was like, ‘I can’t hear you. I can’t hear anything,’”
Steroids brought back her left side hearing twenty percent until March 18th, 2022 where she underwent her third brain surgery that made her world completely silent.
The subsequent brain surgery to save her life nearly killed her. She chose “Somewhere Over the Rainbow” as the last song she might ever hear, honoring her late father’s favorite tune.
The 10-hour surgery went horribly wrong, causing severe complications that left her hospitalized for weeks.
Emerging into a completely deaf world without established communication methods proved devastating.
“I couldn’t communicate to my fiancé. I couldn’t talk to my family. I couldn’t talk to anyone,” she said.
For two years, she struggled with isolation before discovering assistive technology that would change her life.
Through her advocacy work and social media presence, Galloway began teaching others about deaf technology and breaking down barriers.
Her college sweetheart, Brandon, 33, a mortgage broker, proposed on New Year’s Day 2023 in Las Vegas, during their most challenging period of communication.
“He asked me in Vegas, and he had a little sign that said, ‘Will you marry me?’” she said.
The couple faces unique challenges in wedding planning.
“I use deaf technology, so my balance is not the best,” she said, noting they don’t have a date set yet but might soon.
“I might as of next week! I am touring Sunset Ridge Estate!” she said.
“All I think about is being in a dress, walking down an aisle, tripping, and then getting out there and having to read my technology,” she said.
“I don’t care if it’s perfect. Just worry it will be stressful.”
While she’d love children, the reality of her condition makes it complicated.
“I could have kids, but hormones grow tumors, and there’s a 50% chance I can pass it down,” she said. “So it makes it deadly for both me and the child.”
However, after years of setbacks, there’s hope.
“I just got my first stable scan in four years,” Galloway said, noting that things are looking up after 30 rounds of radiation and various chemotherapy treatments.
Her advocacy continues through her platform and organizations like the Children’s Tumor Foundation, where she’s raised millions of dollars and served as national ambassador.
She’s also lobbied at Congress in Washington, D.C. for federal funding and works towards a cure.
“Diagnosed at 16, I was lucky enough to have my childhood,” she said. “NF takes away the kids’ childhood and they deserve to have one, not in hospitals.”
Looking ahead, Galloway acknowledges her fears about tumor growth and potential vision loss, common complications with NF2.
“I’m honestly blessed to be on the other side so far — that can change quickly,” she said. “For the worst luck, I have the best luck.”
