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When Damien MacRae had half of his left ear cut away because of a metastatic mole on his lobe, he was 39. The shock of the surgery – far more drastic than the procedure he had sought to remove a growth he thought looked like an unattractive earring – was only the start of what would be a painful and intense battle with stage 4 melanoma.

One year after the first surgery, an x-ray revealed a fist-sized tumour on one of MacRae’s lungs. He was rushed into surgery, this time to remove the tumour and three ribs on his right side. Once an avid jogger, today standing or sitting for more than 20 minutes at a time is a taxing endeavour for the 44 year old. He muses that his body just doesn’t work like it used to.

MacRae was working in King & Wood Mallesons’ Sydney office at the time of his initial diagnosis. While he has remained focused on his healing, a sudden episode of twitching that began with his hands last year derailed his timeline to get back to the legal work he loves.

The twitch quickly progressed to cause his arms and shoulders to flail uncontrollably and a doctor in the emergency department of Blacktown Hospital suggested the cause might be a brain tumour. An MRI confirmed multiple tumours on MacRae’s brain, but not all were large enough to be extracted. He was treated with radiotherapy following a craniotomy operation, and joined an immunotherapy trial.

MacRae’s time away from work has been challenging and, at times, confronting. No less because he has had to plan his own funeral and explain his mortality to his primary school son, Aiden. Presently, there is some hope for the young father, whose immunotherapy treatment seems to have abated the tumours.

Melissa Coade met the lawyer at his Petersham home to talk about the #SunSmart Lego campaign, which MacRae has launched with his son. The duo has developed a prototype sun smart beach set which they want the Lego Group to commercialise and have set up a petition to gather support. With skin cancer the most common form of cancer globally, MacRae says all children should understand the importance of sun protection. He believes Lego has the chance to be a powerful messenger.

“I completed my longest jog the day before I was diagnosed with the fist-sized tumour on my lung. You would think you would feel that in some way, but I didn’t and I hadn’t. I have never felt any of the tumours. It’s the surgical interventions that have been painful.

I’ve been on this cancer journey since 2013 and, while on leave, I have tried to be with my son as much as I can. At that time, he was about five and was really into Lego. He didn’t really know what was happening as we tried to shield him from what was going on at that age.

I had read about a Lego Ideas platform, where the company accepts ideas from around the world for a new Lego set, so I challenged Aiden and myself to see if we could come up with an idea. If you could get 10,000 votes for your idea, Lego would consider making a real set.

The day after we uploaded [our submission], Lego approved it to go ahead for a vote and we were over 20 votes the first day. It took us a few months to get to 1,000, then 2,000, then 3,000 – and then within a week we got to 10,000 votes. I don’t know how it happened, but word got out there. It went viral.”

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