Rebecca Dufek lived a very active life before she was diagnosed with Neurofibromatosis type 2 (NF2), an incurable genetic disorder that causes brain tumors. Skiing, rollerblading and scuba diving were some of her favorite activities, but at 27, she was busy trying new hobbies as well.
All of that was called into question after her diagnosis. A few months later, Dufek met with a neurologist who told her the tumors would eventually affect her nervous system so severely that she wouldn't be able to keep up with any of these activities.
"I was just completely devastated," she recalls. "I bawled the whole way home … it was the most depressing doctor's appointment I’d ever been to.”
But Dufek, who had already conquered Hodgkin’s Lymphoma when she was 22, knew it was best to get a second opinion. After consulting with other doctors and considering all her medical options, Dufek decided not to sit at home and wait for the disease to overcome her.
Eleven years after her diagnosis, Dufek accomplished a physical feat that would be a challenge for even the most able-bodied of people. Accompanied by her husband, Harley, a team of porters and a documentary film crew, Dufek summited 19,341-foot Mount Kilimanjaro, Africa's highest peak, in October 2010.
Dufek, now 39, decided to undertake and film the journey as a way to raise awareness about NF2. She and her husband, who have lived in Redmond since 2003, also run a nonprofit organization called Help Stop NF2, which raises money for medical research.
Harley Dufek said he was not surprised that his wife decided to take on such a challenging task.
"Well I know her, that's just how she is," he said.
Despite the couple's eagerness, the climb was not easy. Rebecca Dufek's tumors affect many of her basic motor skills, including balance and vision. She also completely lost her hearing in 2004 and uses sign language and writing to help communicate with others.
But fellow climbers and the group's porters were there to help out when Dufek needed extra support.
"We had 12 climbers, 50 support crew," Harley Dufek said. "It was quite the adventure."
"Pole Pole," the documentary that chronicles Dufek's journey, is set to be released in May. The film's title is Swahili for "The Slow Walk."
Ron Lynch, the film's director and producer, became involved in the project when Harley Dufek came into the studios at Cesari Direct, a Seattle-based film production company where Lynch is a manager. Harley Dufek, who runs his own real estate company, was there to film a commercial, but talk soon turned to his upcoming trip to Africa.
Lynch, who has been a filmmaker for 25 years, had made a handful of New Year's resolutions in early 2010. Three of them, he said, were to climb a mountain, make a film for a charitable cause, and visit Africa.
“When someone said all those things I had wished for in one sentence, my intial reaction was to say yes," Lynch said. "When you get to be older, and you wish for things and they come true, you don’t say no."
But Lynch's company did more than just go along with the project. Cesari Direct also donated $225,000 of film production costs to the cause.
Now back in Redmond, Rebecca Duflek is contemplating her third brain surgery. With each medical procedure, she must weigh the risks of sugery against the gradual loss of function that results from the spread of the tumors.
She has already lived three years beyond the life expectancy for NF2 patients.
"We know that she's on borrowed time," Harley Dufek said. "What better use of your time could there to be than to help people out? That's really what we're here for."