Creating Awareness for Motor Neurone Disease

A word for life – Karen Mustica

When my mother was first diagnosed with MND I was sitting in a small room in the hospital with my father and brother. We thought she had dementia, but we were told it was something else. I was so relieved – until the doctor explained MND and its impact.

I couldn’t believe it. As a young adult, I’d had nothing to do with illness until now and I took my own good health for granted. I was shocked. Devastated.

I guess I had been quite sheltered and was even pretty selfish. This day changed my life. And it changed me.

It was July, and we were told Mum only had until Christmas to live. We were told she had no chance. There was no treatment. No cure.

So I went into survival mode. There was nothing else to do. I felt frustrated, helpless. I was an educated woman and yet I had never heard of MND.

I couldn’t do anything to help Mum. I couldn’t save her. But I could immerse myself in something that would mean no-one else needed to experience this awful disease.

It was time to give back. Until now I hadn’t done anything significant with my life. I was a normal young woman who had a good time. My family doubted I could do something to make a difference. But I was determined, even though I was totally unnerved by what I had in mind.

I decided that my friends all had money, and that money could do something really worthwhile if they decided to put it to use. And I had the way to do it.

I took myself off to lunch with a group of close friends and announced my plan to raise money for MND Victoria, and for research. And I told them I needed their help. To my amazement they all said ‘Yes!’ We formed our group there and then. And named it zo-ee – a Greek word for ‘life’. It symbolised our desire to value life, be light and help others do the same.

Our first cocktail event was a huge success. And we have gone on to do many more, including trivia nights and tin shakes. We make it affordable and fun. Even those reluctant to come along always leave saying, ‘That was a great night!’ To date we have raised $300,000.

Losing my mother was life-changing for me and my family. She died just one month after our first zo-ee event. But she lived to see me achieve something no-one else thought I was capable of. I learned about my inner strength and what I could do when I put my mind and will into it.

Others on the zo-ee team have been touched by MND too. And we continue to draw in new members who make a difference. For six years we have volunteered our passion and skills. Over that time the team has grown and changed; our cause is the same.

We want to make MND as well-known as other major diseases are in our community. We want people to care about finding a cause, treatment and cure.

When we were caring for Mum, every day I had the feeling of ‘I’m the only one I know who is living with MND.’ But raising funds showed me we were not alone. And we had MND Victoria to help us organise equipment, guide us with her care and be there when she passed on.

I took mum for a walk one Saturday morning. That afternoon I was with her as she left us.

I want zo-ee to have its own life – for as long as we need to raise money to help those living with MND.