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Toronto: ‘My Name is Emily’ Director Talks ALS Diagnosis, Feature Film Debut

Every indie production is a triumph of passion and perseverance, but bringing “My Name is Emily” to the screen required a brand of tenacity that is rare even in the boot-strap world of art house productions.

That’s because Simon Fitzmaurice, the director of the tender look at an Irish teenager’s struggle to come to grips with her father’s mental illness, suffers from ALS, the motor neuron disorder that is better known as Lou Gehrig’s disease. He was diagnosed in 2008 and given four years to live.

“It was like a private earthquake for me and my family,” said Fitzmaurice. “It took us all years to recover. We expected my death at any moment.”

It also threatened to derail a promising directing career that had included award-winning short films such as “The Sound of People” and “Full Circle.”

Despite the grim prognosis, Fitzmaurice soldiered on with plans to make the low-budget road picture. Hunkering down on production of the film helped him find the will to continue. He credits the two-year production on “My Name is Emily” with keeping him out of hospitals.

“Work has saved me,” said Fitzmaurice. “It was a solace to me. I would be in these nightmare situations, really sick in hospital with doctors all around me and I would be thinking about shots and scenes.”

To raise the money he needed to make “My Name is Emily,” Fitzmaurice leaned on crowd-funding services like Indiegogo. In the process, he received endorsements from celebrities like Alan Rickman and Colin Farrell.

The finished project, which screens at the Toronto International Film Festival next week, follows a young woman as she travels with a boy from school in the hopes of freeing her father from an institution. It has a dreamy and elliptical quality, employing a poetic voiceover that brings to mind Terrence Malick’s “Days of Heaven” or Wim Wenders’ “Wings of Desire.”

“Voiceover fascinates me because it is so knife-edge. Done badly, it is awful; done well, it can approach the sublime,” said Fitzmaurice.

Production on the film presented a number of challenges. Fitzmaurice is paralyzed and communicates through eye-gaze technology. This meant that pre-production became extremely labor-intensive with a lot of time spent on storyboarding the film.

“Preparation was key,” said Fitzmaurice. “It was a different set, because even under tremendous pressure everyone displayed the utmost patience while I typed my thoughts on screen.”

“It was insane, but as a team we made it work,” he adds.

In addition to “My Name is Emily,” Fitzmaurice has authored “It’s Not Yet Dark,” which recounts his decision to push forward in the wake of illness.

He is currently working on a new script.

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