Christmas Appeal 2025

My name is Emma, and in April of 2024 I was diagnosed with MND.

You might recognise me as a member of Victoria’s parliament, representing the Pakenham District. But beyond that, I am a mum, a sister, a daughter, a friend, and someone who is living with MND.

When I first received my diagnosis, it was a shock. Almost a decade ago I suffered a stroke where I had to relearn how to walk, talk, and live independently. With MND I’m doing the opposite.

I’m having to ask for help doing things that I could do yesterday and preparing for what I might not be able to do tomorrow.

The moments we sometimes overlook - sharing a cuddle with my mum, enjoying meals that are full of conversation, and watching my loved ones unwrap their Christmas gifts.

My MND diagnosis doesn’t negate any of these moments.

MND doesn’t take away my love, my mind, or my drive to make positive changes in my community, but it has changed what’s realistic for me to do with my time and energy. Every week I feel like I’m declining, and it’s hard.

When I was first diagnosed, I didn’t know where to start. But MND Victoria has been there for me since that first day, helping me prepare for tomorrow so I can focus on today.

They’ve provided me with resources on how to explain what’s happening to my children, sourced and delivered equipment, walked me through laborious aspects of the NDIS that I had never encountered, and introduced me to a community of people who remind me that I’m not alone.

Even more importantly, they remind my family that they’re not alone and give them spaces to go for support.

MND Victoria’s support has meant that I can spend time creating happy memories with my family, rather than spending even more time researching the disease and figuring out how to tell people what’s going to happen or what I need. I don’t want to spend more of my time on that.

My mind can’t help but wonder. If I’m here next year, will Christmas be at home? Will I be able to decorate or wrap presents myself? Will I still have my voice to say, “Merry Christmas”?

It’s really scary.

My first and foremost worry is always my children. I think about what it’s going to be like for them when I’m not here, and what it’s going to be like for them when I am still here, but I’m unable to do much for myself.

Last year, I made an advent calendar of 24 small presents for my children. Some of them were silly things, like a bag of chips, but each day was a reminder to make the most of every moment and celebration we have together.

This year, I’m doing the same, focusing on creating memories. And I can, because MND Victoria is there to support me with everything else.

Thanks to 250+ supporters, we raised over $41,000!