Human Interest

Woman with Rare Genetic Disorder Wondered 'Who Is Going to Ever Love Me?' Then Fiancé Proved 'He's the One'

McKinnon Galloway and Brandon Kwiatek share a love story — and his "perfect" marriage proposal — that's endured despite deafness, brain surgeries and more due to her chronic illness

Published on February 22, 2023 05:27 PM

A high school volleyball match upended the life of 16-year-old McKinnon Galloway in ways no one saw coming.

Hit in the head by a ball, McKinnon experienced concussion symptoms that led her to the ER and a routine MRI. Doctors then made an unrelated discovery of two tumors in her brain, revealing a rare genetic disorder called NF2.

Her mother, Tracy, 59, quickly went online to research the condition. The disorder — officially, neurofibromatosis type 2, which has no cure — affects about one in 25,000 people worldwide, according to the Children's Tumor Foundation. It's characterized by benign tumors on the brain and elsewhere, damaging nerves that mostly impact hearing and balance. Doctors said her daughter could be deaf before she graduated high school.

"The words that stuck out in my head," Tracy says, "were 'life-spoiling.'"

"It can cause deafness, blindness, inability to swallow, affect the ability to walk, balance issues — a lot," she adds. "These tumors can occur on any nerve in the body, anywhere in the body. And some people have thousands of them. I was devastated."

For McKinnon, whose young life was just starting to bloom, the prognosis had her thinking about her future.

"When you get diagnosed with a chronic illness, one of your first thoughts is, 'I have so much baggage, who is going to ever love me?'" she remembers thinking. "'My life is so complicated. Who would see me for me?'"

McKinnon Galloway real life love — McKinnon Galloway. courtesy McKinnon Galloway

McKinnon graduated high school without losing her hearing and went on to enroll at the University of North Carolina-Charlotte. And in 2015, she went on a date with Brandon Kwiatek, a college friend of two years who invited her on his fraternity's formal "mountain weekend."

"That was really where my eyes opened," Brandon says. "She just has this bubbly personality, and I was just really happy when I was around her."

McKinnon, now 29, had been the fraternity's "sweetheart" prior to the date, and Brandon had been the treasurer tasked with approving an invoice when the group sent McKinnon flowers before her second brain surgery, which took place when she was 21.

He knew nothing about her illness at the time. "As you can imagine, I think she was a little reserved, maybe afraid and shy about sharing that information," he says.

When she did, "at first I was a little bit afraid, especially when I didn't even understand what the disease was," Brandon, now 30, continues. He, too, went online to educate himself. It didn't discourage him from becoming friends and eventually asking her out.

"If you really, really truly got to know McKinnon, I mean, it's so clear she's a person that's hard not to love," he says.

After her diagnosis, McKinnon and her mom involved themselves with the Children's Tumor Foundation — Tracy later served as board president — and in 2019, McKinnon became the group's elected ambassador. The job let her live her dream of moving to Manhattan, and joining the effort to lobby for more clinical trials and to find a cure.

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The role elevates those who, "despite all their challenges, are actually having the courage to move on and to be an inspiration, often for the younger generation, and also sometimes for families that just have their child diagnosed with NF," says Annette Bakker, president of the foundation. "McKinnon definitely ticks all those boxes."

Says McKinnon: "I hope my perspective on life gives others a chance to see that anything is possible." She credits that outlook to her mom. "She has never once made me feel that my dreams are not possible because of my illness," McKinnon adds.

But the start of the COVID-19 pandemic in 2020 — and diminished hearing in her left ear, after an earlier surgery took away the hearing in her right — sent McKinnon back home to North Carolina. "I was just nervous. I only had one ear left, and I really wanted to fill my memories with Brandon's voice and my mom's voice and my family's and friends' [voices]," says McKinnon, whose father had died in 2018.

Back home, she and Brandon moved in together. "In the back of my head, I always said that if marriage is forever and ever, what's the rush, right?" says Brandon.

"See, I'm a woman," says McKinnon. "I talked about it all the time."

Brandon heard her. More than a year ago, he took Tracy out to dinner to ask for her daughter's hand. Tracy gifted him with her deceased husband's wedding band, allowing Brandon to repurpose a diamond for an engagement ring.

"You understand," Tracy recalls telling him, "this is not going to be the normal journey that couples have, and it's going to have some difficult times, but you'll be having some really fulfilling times. You will learn things that other people will never have the opportunity to learn about real love."

Last year proved her point, as circumstances caused Brandon to put his proposal on hold.

Because McKinnon had wanted to see the northern lights, mother and daughter traveled in Dec. 2021, to Finland, then to Russia, where McKinnon awoke on Jan. 1, 2022, with no hearing. Prescribed steroids helped restore some of it. But growing pressure from a tumor on her brain stem was causing her face to go numb. Surgery to remove it would strip away her hearing for good but it had to be done.

Before the anesthesia kicked in, McKinnon asked her surgeons to play "Over the Rainbow," by the Hawaiian performer Israel Kamakawiwoʻole, a favorite recording of her father's. "I just really wanted him with me," she says.

That operation was one of two brain surgeries — her third and fourth she's undergone in total — that McKinnon endured last year, along with facial paralysis, her eyes rolling inward, double vision and more.

"I do not believe [the illness] will affect her life expectancy, because she did chemotherapy for eight years and she had to make some tough decisions about sacrificing the nerves that feed her face and ears and balance to protect her brain stem, and therefore her life," says Dr. Jaishri Blakely, who has overseen McKinnon's care for a decade. "In spirit and resilience, she's doing amazing."

During her recovery, Brandon found his moment. "I just wanted to wait and make sure it was something she could celebrate," he says.

In Las Vegas on Jan. 1, while McKinnon showered before the two went out to a Cirque du Soleil show that night, Brandon hurriedly unpacked the red paper rose petals he'd brought with him, and scattered a trail from the bathroom to the bed, where he formed them into a heart shape.

After McKinnon's full loss of hearing last March, they've been learning sign language together, but he didn't want his message to be muddled.

"We just went through so much last year, and we really wanted to start off the new year on a very positive note," McKinnon recalls about the trip. "When I came out [of the shower] and felt the rose petals under my toes, it put a smile on my face, because Brandon always does nice things, and I just thought it was one of his nice things."

"But my favorite part," she continues, "was when I looked up from the rose petals, and saw him standing there with a sign language shirt on that said 'love.' And he had gotten this wooden rose petal, and it said, 'Will you marry me?' on it, just to make sure I understood. And he got done on one knee."

"It was perfect," she adds. "I said yes before I even saw the ring."

"She not only said yes," Brandon says, "she jumped up and tackled me, basically."

They haven't set a date yet — but decided they'll exchange vows in Costa Rica, where Brandon, who manages a sales team of mortgage consultants, lived in his youth with his mother, who was born there.

McKinnon runs a photography business, and also creates product designs that incorporate sign-language, while using and showing off a phone app at the forefront of deaf technology than transcribes conversations for the hearing-impaired.

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Although no others in McKinnon's family have tested positive for the genetic disorder, Dr. Blakely has explained there's a 50-50 chance of passing it along if she one day has children. Again, the couple is undeterred. "We definitely want to have kids, but there's bunch of ways that you can have kids," says McKinnon. "There's a ton of children out there that need homes."

"She's trying to touch as many people as possible," says an admiring Brandon. "I couldn't tell you how I would handle the situation if I was in her shoes, but she's just an open book, and I think she does that in the hopes of inspiring others."

"We have an amazing life together, and I'm really, really excited about what the future holds," Brandon says. "I think more and more we're just grabbing momentum."

McKinnon agrees. "He's the one," she says, "who showed me that I deserved to be loved."