Wednesday, 15 May 2024

Members

Member for Pakenham

Emma VULIN (Pakenham) (09:40): I thank the house for allowing me to deliver my statement. As many of you know, I have faced a few challenges in my lifetime – a stroke at 36, a close political election campaign – and now I face my biggest challenge: motor neurone disease. Firstly, I would like to thank my family – my partner Matt, my children Sienna and Sage, Mum, Dad, Dragan and my sister Ceri and my nephews – who are facing this challenge alongside me, but also all of you for the kind words and gestures that many of you have given to me from all sides of this chamber and from the other place. If I focus on all that kindness, I get a bit emotional, so please bear with me.

I would like to acknowledge other people in this chamber who have a battle on their hands with illness, the member for Benambra, and also members who have lost loved ones to MND or other serious illness. In fact, anyone who has lost a loved one, my thoughts are with you too. I am not the only one facing the beast; there are over 2000 Australians and over 500 Victorians living with MND, and that is also a lot of friends and families who are impacted also. I have been privileged to interact with so many people and meet such inspiring individuals since I went public with this news. There is a big MND support family, and it brings us together. I also want to shout out to my friends Adena Savva and Matt Stickland. My beautiful community of the Pakenham district have also been very supportive, and I thank them for trusting that, despite me battling the beast, I will continue to be a voice for them here in Spring Street.

I had a choice: I could curl up and cry, which I did do for two days, or get out and do what I need to do. The legendary Neale Daniher says, ‘Don’t say; do!’ – except for me it was, ‘Stop crying and do!’ We are fortunate to have Neale Daniher and his family with us in Parliament today. As a family, they have done so much with raising the profile of MND. Not everyone completely understands that motor neurone disease is a condition that progressively damages parts of the nervous system and leads to muscle weakness, often with visible wasting and unfortunately with no current cure. It is a terminal disease. Neale Daniher, Pat Cunningham and the late Ian Davis founded FightMND 10 years ago, in 2014. Since then they have grown, raising the profile of the disease and raising millions and millions of dollars for research to find effective treatments and to ultimately find a cure. Various other supports are also given.

Not long after my public statement Neale reached out to me. Neale and his wife Jan invited Matt and me to their house for a chat. It was an open chat to open our eyes to what our journey ahead might look like, with tips and information that we are very, very grateful for. Then an invitation to join them at the FightMND launch of the 10th beanie – it was an incredible night, very emotional, but I am so grateful for that opportunity, especially for my kids so they could see that we are not alone. And a big thankyou to CEO of FightMND Dr Fiona McIntosh for her support also. Thank you, Neale and the entire Daniher family, for opening your arms to not only me but so many.

I also want to talk about the work that MND Australia and MND Victoria do. I am honoured to have the CEO of MND Victoria Kate Johnson in Parliament today. Unfortunately my MND support coordinator David Cox is unwell and could not make it. On the first day of diagnosis I called MND Victoria and I cried; I did not know where to start. Joyce was there to hear me and to provide useful information and start my application for a support coordinator. A couple of weeks later David Cox came to our home. He listened to us for hours, and he explained everything that MND Victoria had to offer both me and my family. They are an incredible organisation who do a large range of things but predominantly help with the care of people living with MND from the beginning through to palliative care. MND Victoria provide mobility aids, equipment, counselling and so much more. I thank them and their team from the bottom of my heart. A huge thankyou to all the members and staff who purchased a beanie to support FightMND and who purchased a pin from MND Victoria, and a big thankyou to the Parliament, the Parliament team and you, Speaker, for allowing us to have a group photo in the chamber. Please encourage your friends and family to make a donation to both of these wonderful organisations if they are able to do so. They do such a wonderful job caring and supporting families with MND.

In closing, the disease has progressed in me to the point that my right arm is very weak, so for any of my parliamentary colleagues who see me peering at the cheese wheel in Parliament of an evening, please cut a piece for me.

Members applauded.