Christmas Appeal 2024

Losing you to Motor Neurone Disease was the hardest thing I’ve ever faced. Even now, all these years later, the ache is still there. But I’m so grateful for the time we had, for the lessons you taught me, and for the countless memories that keep you alive in my heart. 

Christmas was always your time to shine, wasn’t it? You were larger than life, the heart of every gathering. After lunch, you would don the Santa hat, sit next to the tree and gather the family. You would call the name on the gift card and make a series of guesses as to what the present could be. We all had to watch and wait as the gift was opened. “It’s a cricket bat, no it’s last week’s fish and chips paper!” The more obvious the gift, the more ridiculous your exclamations were! By the end of the gift-giving, we were all rolling around in fits of laughter!

When I think about you, Dad, I think about authenticity. "What you see is what you get," you always said, and it was true. You never pretended to be anyone else, and people adored you for it. Perth loved you for it. Whether behind the microphone on the radio, in front of the camera on Telethon, or just being you with friends and family, your openness and honesty were magnetic. 

And, of course, your humour. I can’t even count the number of times I’d roll my eyes at one of your jokes, only to burst out laughing a moment later. That’s the thing about you, Dad—you had this gift for bringing joy to any situation, even when times were tough. 

Had we known earlier that it was Motor Neurone Disease you had, we would have loved to have accessed the support from MNDAWA, but unfortunately, we weren’t that lucky; due to you being misdiagnosed, we didn’t actually have the benefit of talking with the team, at MNDAWA until after you passed. This is why the education of GPs and allied health professionals is so important to us now Dad.

Staying connected with MNDAWA has been such a comfort over the years. Through them, I’ve met so many incredible people who know what it’s like to lose someone they love to this cruel disease. It’s like being part of a family, one that understands the pain but also celebrates the lives of those we’ve lost. I feel close to you whenever I attend a coffee catch-up or one of their events. It reminds me of the amazing community you were part of and keeps your memory alive in such a special way. 

This Christmas, I’ll raise a glass to you, just like I always do. I’ll share your stories with the family, especially the little ones who never got to know you but hear about you all the time. I’ll tell them about the man who brought laughter to everyone he met, who cared so deeply about his community, and who taught me that life is too short for pretence.

Even though you are not with us anymore, we really feel his presence on Christmas Day as we continue our family tradition, and one of my brothers or kids often pipes up with a ridiculous dad joke. Every year for 10 years so far. I hope we always do.

I miss you, Dad. Every day, I wish I could hear your voice, feel your bear hug, and share one more laugh. But I know you’re here in spirit, watching over us and probably cracking jokes at my expense. 

Merry Christmas, Dad. I love you more than words can say. 

Your Cindy

The day my neurologist asked to meet with me, my Mum, and my Dad, I was nervous but still hoping for answers that weren’t life-altering. Instead, he told me I had Motor Neurone Disease (MND). My first reaction was to ask, “When do I start medical procedures?” I was ready to roll up my sleeves and fight this head-on. But when he explained that there was no cure and no treatment to stop it, the weight of those words hit me like a tonne of bricks.

At first, I was a mess. It’s hard to hear something like that and not feel like the ground has been ripped out from under you. But then I thought about who I am. I was a boxer until ten years ago, and boxing teaches you one thing above all else: how to keep fighting when you’re down. This is just another round for me, and I’m determined to give it everything I’ve got.

MND has changed my life in so many ways. I used to be able to do 500 sit-ups a day and 900 pushups in an hour. Now, that’s out of the question, but it hasn’t stopped me from staying as active and positive as I can. I live each day with an open and positive attitude because that’s what life deserves.

I couldn’t do this alone, though. The MND Association of WA (MNDAWA) has been with me every step of the way since my diagnosis. They’ve worked so hard to make sure I have everything I need to live with this disease. They’ve helped me adapt to the changes in my body, and they’re always there to answer questions, offer advice, and provide support when I need it most. Honestly, they make me feel like a celebrity—I should start giving out autographs!

"The Motor Neurone Disease Association of WA have given me so much to live for. They’ve reminded me that I’m not just surviving with MND; I’m truly living with it. I’ve found new ways to enjoy life and connect with the people I love. This Christmas will be extra special for me, not because I’m ignoring my diagnosis, but because I’m embracing what I still have. Every life is worth living, and with the help of MNDAWA, I can say that I’m living with MND, not dying from it."

Elizabeth was diagnosed with MND at just 37 years old in 2024. As a mother of three children aged 10, 12, and 15 her life took a dramatic turn. She is determined to make everyday count, facing the challenges of MND with the support of the Motor Neurone Disease Association of WA.
“I used to play soccer and take part in triathlons, but one day I felt a heaviness in my legs and couldn’t run the way I used to. I had no idea that it was the beginning of something as life-changing as MND.”

 Despite her diagnosis, Elizabeth continues to put her children at the centre of her life. Her children’s activities, their day-to-day lives, and her role as a mum are still her greatest focus. MND may have limited her physically, but she is determined not to let it rob her of these precious family moments.

 Soon after her diagnosis, Elizabeth experienced the heartbreaking loss of her mum, her biggest source of support. “While MNDAWA couldn’t replace my Mum, they offered me the care and practical help I needed, providing me with comfort and a sense of community at a time when I needed it most.”

Elizabeth is also a relative of Professor Justin Yerbery AM, who dedicated his life to researching MND and finding a cure. His passing from the disease in 2023 was a significant loss, but Elizabeth carries his legacy forward by raising awareness about the impact of MND.

“I am living proof that MND isn’t an old person’s disease, it’s affecting people like me in the prime of life, pulling us away from our children and the chance to watch them grow
up.
Right now, MNDAWA is helping me live as fully as possible. Life is different, but we’re adapting, and with their support, I’m holding on to as much normalcy as I can this Christmas time for my family.”

Dalvene says that she feels blessed to have Peter as her primary carer, along with the support of her adult children who were particularly active in the early days by researching and connecting with the relevant support and funding organisations. Dalvene and Peter also have an extended circle of support with five gracious friends (pictured above with Dalvene) who visit to offer Peter respite, drop off meals and help with outings. Above all, their friendship supports Dalvene’s drive to live a positive, full life. Peter is the first to commend Dalvene’s “sense of humour and fighting spirit” that help her face the day-to-day challenges.

Dalvene has been supported by the Association through the ongoing care of the MND Advisory service.

Dalvene and Peter have acknowledged the sense of relief they felt after their initial contact with their Advisor, who has guided them with emotional support, sourced equipment, provided referrals and assisted them to access available funding. In addition to the MND Advisory service, Dalvene has also had the support of the MNDAWA’s Respiratory

Physiotherapist who has promptly arranged equipment as needed as well as remotely providing education for Dalvene and her care team. “Without the professional people from the Association, Dalvene and myself would be struggling to cope.”

Peter highlights that Dalvene “feels very well supported and safe under the care of the MNDAWA and would encourage people to join the Association to get involved in all the events offered and the fun possible to be had.” Dalvene has been joined by her friends in attending MNDAWA Pamper Days, which provide a range of care treatments in a welcoming setting. Dalvene makes an effort to connect with others living with MND at any opportunity so she has embraced the range of events for the activities on offer as well as the potential for personal connections. Having always been a well-connected, social couple, and having both worked in charitable organisations, it comes naturally to build connections and find comfort in shared experiences.

Participating in the 2024 Walk to Defeat MND, ‘Dally’s Team’ of family and friends had over 40 participants and raised over $8,100. Their presence at these events provides an opportunity for them to meet other families, while giving back to the MND community and showing their appreciation for the support they have received.