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Leaving a legacy

Flourish 20 Sep 2016

Ian Davis and Scott Sullivan, both affected by motor neurone disease, pedalled a million metres on a tandem bike and filmed their journey.

Ian and Scott during filming of their journey, dressed as Superman and Batman.
It made me wonder what i'd do if i was faced with all those really big life questions, how would i react. They're pretty inspirational guys.

The powerful new Australian film Legacy poses a stark question. What would you do if you were given 27 months to live? For Ian Davis and Scott Sullivan, the soul-searching that followed being struck down with motor neurone disease (MND) threw up one answer: fight. “Ask yourself, what would I do? Would I use that time to promote a cause about a disease that’s robbed me of my life?” says Ian in the voiceover to the documentary that follows the men as they pedal on a modified tandem bike from Brisbane to Sydney.

It was an epic journey of one million metres for MND, a degenerative disease that rapidly shuts down the body’s nervous system, robbing its victims of movement, and eventually speech, while leaving them with normal brain function. Two Australians each day are diagnosed with MND and handed its average life expectancy of 27 months, along with the terrible news that there is no real treatment and certainly no cure.

That’s where Legacy comes into it. Ian, a Melbourne-based former haemotologist – he self-diagnosed MND after recognising the symptoms – and Scott, a father of two from Brisbane, floated the idea of documenting their fundraising ride with filmmaker Tony Prescott. “I was imagining a couple of guys with Handycams posting stuff on Facebook, that kind of thing,” Ian says. Prescott went far better, producing a feature-length, cinematic work released nationally in May this year, with the help of funding to the tune of $75,000 raised through community-based platform Pozible.

“Ian worked in a hospital with a guy I went to college with – it was a pretty loose connection,” Tony says. “He was 33 at the time, I was 32. It made me wonder what I’d do if I was faced with all those really big life questions, how would I react. They’re pretty inspirational guys.” 

For the 2013 ride, which raised money for Scott’s foundation, MND and Me, the men played to their strengths. Ian was in front with his arms, Scott in back with his legs. “For months every night I’d train in mum’s garage,” Ian says. “But once we set off, with Scott’s extra weight on the back and the low centre of gravity on the bike that we needed – let’s just say that it was pretty tough going. We had people walking faster than us going up hills.

It was only 15 minutes after the journey was complete however, when he felt the impulse to do it all again. Ian suggested to Scott they turn around and go back the way they came. The response? Laughter. He might have been shot down, but the idea made sense: “We had some beautiful times out there, in the countryside with the sun shining. For moments, I was able to forget I was sick.”

There are no happy endings with MND. Six months after filming wrapped, Scott died after suffering severe head injuries in a fall. Wheelchair-bound, Ian has fought MND for five years. He requires 24-hour care and fears the day he is no longer able to pull his 18-month-old son Archie onto his lap for a cuddle. 

“I’m immune from the darker emotions mostly, although the dark days happen with things such as, for example, last week I was able to do up a zipper on my jacket and this week I can’t.” He remains a tireless campaigner for MND. He founded Cure for MND – fellow sufferer, AFL great Neale Daniher, is its chief patron –  and is determined to make as many people as possible aware of a disease that is far from uncommon.

In fact, in many ways,  Legacy’s legacy will be its grassroots approach to spreading awareness of MND, a method Ian hopes will “galvanise and empower” the public to sign up for screenings, via the  Legacy website. 

“I see it as an extension of crowd funding, saying to people that if you see merit in this, sign up for a screening. It’s incredibly hard to raise money in this day and age, and for me Legacy is more about getting it in front of people. I’d rather raise a single dollar from a million people than a million dollars from a single person,” he says. 

“I also hope it shows newly diagnosed people that they’re not alone. This disease tries to take everything from you, but it doesn’t take your spirit.”

words Larissa Dubecki
Image by Dean Golja

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