A Local Woman, With a Deadly Disease, Climbs Kilimanjaro

By Rachel Belle

Listen to A Local Woman With a Deadly Disease Climbs Mt Kilimanjaro

Most of us are born with a gene that fights off deadly tumors, so that they’re not constantly growing inside of us. Rebecca Dufek, 40, doesn’t have this gene. But she does have a super rare disease known as NF2.

“She has tumors all through her spine, she’s got them all through her brain,” says Rebecca’s husband, Harley. “Then can never get them all out. It’s akin to taking a wet bowl of spaghetti and some peanut butter and mashing those two things together and saying, ‘Okay, we’re going to take a scalpel and try and get out all this peanut butter but don’t nick any of that spaghetti. It’s impossible. You can never get it all out.”

Harley will be speaking for Rebecca for most of this story since she is now deaf. Since she was diagnosed with Neurofibromatosis Type 2 in 1999, half of Rebecca’s face has become paralyzed, she has trouble with balance and double vision and she lost her hearing.

“I really loved listening to music a lot. That was one of the hardest things,” Rebecca says.

But Rebecca, a lover of hiking and scuba diving, who was told she might lose her ability to walk, is not a curl up and feel sorry for herself sort of person.

“She’s had three craniotomies,” Harley says. “These are open head brain surgeries, eight to 10 hour surgeries. She was on her second one. We were sitting there, in the doctors office, waiting for him to come in. Becky, and her positive manner, she just pipes up and says, ‘Do you think the doctor will let me climb Mt. Kilimanjaro after this next surgery?’ So what do you say to that, right? Other than ‘You know what, honey, I think you can do anything you want to do!'”

Harley jumped right on board with the idea and, right there in the doctors office, called a friend of his who makes movies.

“I said, ‘Look, here’s what we’re going to do: We’re going to go to Africa, we’re going to climb Mt Kilimanjaro, we’re going to film a movie and we’re going to cure a disease. He said ‘I’m in!’ That was it. Three years, $225,000 in donations later, here we are, and we’re done with the movie.”

The documentary is called Pole Pole.

“That is Swahili for ‘slowly slowly.’ It’s a metaphor for her disease: It’s a slow killer. When you’re doing big mountain climbing you’ll hear the porters saying ‘Pole Pole! Pole Pole!’ They’re just telling you to go slowly. Step, breathe, step, breathe.”

Step, Breathe, Step, Breathe is the way Harley and Rebecca live their lives these days. The average person diagnosed with NF2 lives to be 36. Rebecca is 40, and has no idea how long she will live with her tumors, so the couple lives every day to the fullest.

“Don’t focus on what you lost, let it go, that’s gone, you’re a new person now,” Rebecca advices. “If you have a dream, go for it! Just because you have NF2 doesn’t mean it’s over. Things change, we have to be adaptable, we have to go with it.”

Since her diagnosis, Rebecca has earned a masters degree.

“She actually graduated from the University of Washington with her master’s degree, as the only deaf person in that program. Not knowing any sign language.”

She climbed Mt Kilimanjaro and then, 40 days after her 3rd open brain surgery, she ran a half marathon. She has plans to hike to Camp Muir next month and hike up Mt Adams next year.

“This is my metaphor: poker,” says Harley. “You can win poker with a lousy hand. You can win the biggest pot in the world with a lousy hand. Life is the same way. Play the cards that you’re dealt. Sometimes you might feel that you’re dealt a really lousy hand: Play it. You can win the biggest pot in the world with a lousy hand Do what you need to do to win.”

Rebecca and Harley’s documentary, Pole Pole, will screen Thursday evening at the SIFF cinema at the Uptown in Queen Anne at 6:30p.