May 2017

Where you do you currently live?

I mostly live in Angurugu community on Groote Eylandt, but I am also studying a Certificate II in Media at Batchelor Institute in Darwin, so I’ve been staying in there sometimes too.

Describe an average day for you, now that you’re not filming?

I still do some filming most days. I film local ceremonies and like to tell my people’s stories. I am also enjoying spending time in Darwin at Batchelor Institute and visiting family who are living in Darwin. I’ve shared some of my stories on youtube, here’s one of my favourites:

How did you feel when the MJD Foundation asked to create a film about your story?

I was really happy because I love making films and I really wanted to tell my story about MJD and the dream I had where my ancestors told me where to find a cure.

Did you work closely with the film directors to create the film, in terms of the storyline and scripts?

I already worked with Nik (Nik Lachajczak from ZakPage) and Browndog (Justin Brown, Browndog Productions) making some DVDs about MJD to teach doctors and nurses. And also to create a Telstra promotional DVD about how Telstra helps us with our communication and the iPad project. So I knew Nik already, and yeah, we worked closely together on making the story and writing the script.

What was your favourite part about creating the film?

The beach ceremony scene was the best. A big wet season storm came in just at the right time. I am also called the rain man, so it was good when the rain came just when we needed it for the story.

Do you have any funny stories or anecdotes about the process of creating this film?

We had a lot of good times and laughs, like this one…

What was the most challenging or difficult part of the process for you?

It’s hard to tell this story. It’s not only me, but many of my family with this disease. Many of my family have finished up with this disease.

Has life changed since you had a film created about your story?

People are proud of me for making this film. And I am about to have my first ‘red carpet’ walk in Melbourne on 7th July at Telstra.

I understand you’re also sending samples of the bush medicines to researchers in Sydney. Can you tell us about this process?

We got some seaweed, and dried it out. Then we put a label on it to say what is was and where it came from. And we sent it to Dr Angela at the Zebra Fish lab at Macquarie University. We are hoping to do more of this and looking for funding for this project. I haven’t visited the fish yet, but I hope I will when I go to Sydney.

How does MJD affect your everyday life? Is there something, for example a hobby, that you aren’t able to do anymore?

I am getting more wobbly now, but I work hard to stay strong and do my exercises with MJDF. I fall over more these days. My paintings are a bit too wobbly now. I want to stay on my community and be as independent as possible. I want to keep doing filming and storytelling.

How has the MJD Foundation helped you through managing life with the disease?

MJDF helps me a lot. And they help me every day.

How do you hope people will react to your film?

I hope people think it’s a good story, and I hope it touches their hearts. And I hope they understand how much we need to do more research.