She looks like a model — a stunning 5’9 with fiery hair and a vibrant, extroverted personality.

Her movie is winning awards at film festivals around the world and her LiveJournal page has thousands of avid followers. Google knows to anticipate her name.

But Eva Markvoort is not a rising Hollywood celeb. Her film, 65_RedRoses, is a documentary tracing her journey through a double-lung transplant. She suffers from cystic fibrosis, the fatal respiratory condition that, in simple terms, causes a build-up of mucus in the lungs and impedes breathing. It’s the most common genetic disease found in Canadians. Says Markvoort, during a recent interview with Eye Weekly: “Some people have brown hair, some people have braces, some people have to be in and out of the hospital.”

Though she’s lived with the disease since birth, the 25-year-old theatre student from the University of Victoria has spent her years attempting a normal lifestyle. Her flippancy towards her condition is seen throughout 65_RedRoses — which screened at Hot Docs last spring and makes its TV debut tonight on CBC’s The Passionate Eye — and that attitude is only one indication of her silver-lining personality. She credits CF for strengthening the bond she has with her younger brother and sister. She names them as caregivers and protectors — an uncommon dynamic for an elder sibling to admit to — yet her optimism doesn’t erase the feeling that she faces mortality alone.

“There is a part of me that [my family] will never understand… and that I deal with every day of my life,” she wrote in her first online journal entry in 2006. “I need somewhere to vent. To let go and not always be motivating and inspiring. I need somewhere to let my fears go unleashed.”

Since that post, Markvoort has written with remarkable openness, publishing photos, poems and diary entries. She initially intended to connect only with fellow CF patients (whom she is not allowed to meet in person because sufferers can make each other sicker), but visitors to her site have left hundreds of comments; some have started up their own LiveJournals in support for her struggle.

That ability to “inspire and motivate” are what moved Markvoort's long-time friend Philip Lyall to introduce her to his UBC film-school partner Nimisha Makerji. The pair had been looking for a post-graduation project and decided to chronicle Markvoort’s wait for the double-lung transplant. They named the film 65_RedRoses, after her online identity, itself inspired by the way Markvoort used to mispronounce “cystic fibrosis” as a toddler.

When co-director/producers/editors Lyall and Makerji began filming, Markvoort’s lungs were so clogged doctors said that, without a transplant, she wouldn’t make it to 2009.

“We thought she might actually die,” says Makerji. “That’s one of the surprises of the documentary: you never know where it’s going to go.”

As captured in the film, a mundane visit to a pumpkin patch the week before Halloween ’07 gets interrupted by a piercing beep from Markvoort’s pager: a new pair of lungs is available for transplant. It’s such an excruciatingly emotional moment that Lyall nearly drops his camera. “It was kind of a blur,” he says. “I didn’t even know what I shot, I was so involved in the moment.”

What footage he did get actually landed the filmmakers the CBC backing. They could afford a crew and greater post-production exposure, which led to the film’s popularity with Hot Docs audiences and three prizes at last month’s Vancouver International Film Festival, including awards for both most popular Canadian film and documentary. The film was recently picked up by PBS International and will be screened internationally.

Apart from the acclaim for the film's honesty regarding the highs and lows of Markvoort’s struggle, 65_RedRoses also made her the face of a cause by raising awareness about organ donation. In the thick of the US healthcare debate, Makerji has only praise for the Canadian system.

“[Watching Eva’s surgery] was probably one of the most amazing moments of my life,” she says. “It was beautiful. There’s an art to what surgeons do.”

Dr. John Yee, Markvoort’s surgeon and the director of BC’s Lung Transplant Program, gave Makerji and Lyall an all-access pass to appointments and even the surgery itself. (Their cameraman was getting queasy during the epidural; the team wasn’t sure they’d be able to handle watching their friend’s chest cavity being opened.) But gaining entry wasn’t the only hurdle. The filmmakers were also experiencing their own life-altering change as they had to make the step from students to professionals. Yet, says Makerji, “after the surgery was when the real drama began” as Markvoort’s body tried to adapt to the new organs.

Since the documentary’s Hot Docs permiere, Markvoort has hosted two 65_RedRoses fundraising galas for the Canadian Cystic Fibrosis Foundation, traveled to international festival screenings and done dozens of interviews. She road-tripped to California with her brother and, noting the items scratched off her to-do list in the past year, “skipped over the Brooklyn Bridge.” Yet, on the first anniversary of receiving her new lungs, Markvoort was already back on the transplant list.

In September she had to turn down her dream job, working with child cancer patients at Sick Kids Hospital’s Camp Oochigeas, because she found out she was rejecting her lungs and was diagnosed with bronchiolitis obliterans, which causes the lungs to be irreparably cut off from her airways.

Markvoort has since moved back into her parents home and is living with 15 per cent of the normal lung functionality. “It means [my] airways are … obliterated,” she says. “I can’t really walk. Can’t do stairs.” A simple task like sitting up in bed takes her five minutes. Family and friends — whom she lovingly refers to as her “ladies and gentlemen in waiting” — take shifts helping her. Hundreds of supporters have written to her professing that she’s inspired them to sign organ donor cards. More have sent letters and gifts that she hangs in her room.

The ever-busy Markvoort finds it difficult to be forcibly subdued by her body. Despite her worsening condition, she and her friend Cyrus McEachern, a UBC medical student, are working on a new organ-donation awareness campaign in the form of an art project: they locate other organ recipients, Markvoort paints the organ’s likeness onto the operated spot and McEachern photographs the subject. She continues to post on her web journal nearly every day.

Most remarkable about Markvoort is her optimism. 65_RedRoses, she says, has made her “calmer in facing death. It may be able to accomplish things that I can’t. I hope that it saves lives.”

On the night of our interview last week, Markvoort’s breathing became too obstructed and she was hospitalized. She posted on her journal first. “I am so tired,” she wrote, “but don't you worry. i will fight! i will never ever ever ever ever give up!” She is doing better but remains in hospital.

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