As Zakhia Aoun and her family joined the crowd at Walk to Defeat MND Sydney in 2008, for the first time they were surrounded by others who deeply understood what they were going through. While there was heartbreak in seeing there were so many others facing MND, they felt comfort in knowing they were not the only ones on this journey.
At the time her sister Therese, affectionately known as Tazzy, was in the midst of facing her biggest challenge – MND. Zakhia said their first Walk to Defeat MND Sydney ‘allowed us to show Tazzy that we were beside her every step of the way, and that we weren't facing this journey alone’.
“We attended for Tazzy. When someone you love is diagnosed with MND, you quickly realise there is no simple fix and no easy path forward. The walk gave us an opportunity to do something positive.,” Zakhia said.
“We were also motivated by the chance to support the incredible work of MND NSW. Even in those early days, we could see the difference the organisation made to families like ours through practical support, equipment, information and understanding,” she said.
Walk to Defeat MND Sydney holds a special place in Zakhia’s heart, and she said the first Walk they attended together ‘was one of the first significant milestones in our journey as a family living with and caring for someone with MND’.
“Family and friends came along to support Tazzy and support us, and that meant the world. I also remember being struck by the number of people affected by MND. On one hand it was comforting to know we weren't alone. On the other, it was heartbreaking to see so many families facing the same challenges we were. It was a powerful and emotional day that has stayed with me ever since,” Zakhia said.
“Physically, the Walk was the easiest thing we did during Tazzy’s journey. Emotionally and spiritually, it was something else entirely. As we pushed her through the Walk, we remember thinking that it was a symbol of what our family was doing every day - we were walking beside her through the uncertainty, the heartbreak, the challenges and the moments of joy. There were smiles, laughter and plenty of conversations, but there was also a deep awareness of why we were there,” she said.
“You could almost feel that shared understanding. It's difficult to explain to someone who hasn't experienced MND just how much it changes a family. At the walk, we didn't have to explain. Everyone just understood.”
Before Tazzy sadly passed away, she left Zakhia with words of wisdom that inspired her to continue volunteering and supporting MND NSW and Walk to Defeat MND, so other families facing the devastating condition can get the support they need.
“Tazzy once said something that has stayed with me ever since: ‘MND is not a disease that one person gets. It is a disease that consumes the whole family’ and that ‘it marked both the end and beginning of her life’. Those words were confronting and profoundly true. Both she and our family faced a very different journey. It changed every one of us. Looking back, that message captures exactly why events like the walk meant so much to our family. They reminded us that while MND affects an entire family, no family has to face it alone,” Zakhia said.
“I never really saw staying involved as a decision. It was something I needed to do. After Tazzy passed away, I felt a strong need to continue honouring her journey and everything she went through with MND. Volunteering gave me a way to keep her memory alive while also supporting other families facing the same challenges. At its heart, everything I do with MND NSW is still for Tazzy. I know she would want people living with MND today to have better support, better treatment options and, one day, a cure. Continuing to volunteer feels like a way of carrying her legacy forward and making sure her story continues to make a difference.”
Over her years of volunteering, Zakhia has seen the importance of the MND Community coming together to share their experiences and offer support.
“While Tazzy is absolutely the reason I started, and remains the reason I stay involved, the people I've met along the way have become a huge part of my journey. Over the years I've met incredible families, carers, volunteers and people living with MND. Every person has their own story, their own heartbreak and their own reason for being there. Those connections are incredibly powerful,” she said.
“I've also built relationships with many of the wonderful MND NSW staff. People like Kym Nielsen, who has known my sister, my family and me since almost the beginning. She has shared in our heartbreak and celebrated joyful moments with us along the way. Then there are people like Marcia Lazo, and both her and Kym’s families have generously given so much of their time to support the MND community, and I love seeing them every time we see each other at an event. When you see that level of commitment and generosity year after year, it's hard not to be inspired. The MND Community becomes part of your extended family.”
Zakhia is already preparing for Walk to Defeat MND Sydney 2026, and is encouraging everyone to come along and support their MND Community at Blaxland Riverside Park on November 9.
“Please come and join us. Whether you've been personally impacted by MND or simply want to support an important cause, your presence matters. Every step you take is a step in solidarity with people living with MND and the families and carers who walk alongside them every day,” Zakhia said.
“The funds raised help provide vital services, equipment and support, while also contributing to research that brings us closer to better treatments and, one day, a cure. To me, that's one of the greatest gifts you can give someone. Sadly, Tazzy isn't here to benefit from the progress that will come, but I know she would find enormous joy in knowing that others will,” she said.
“And so I’d like to say thank you - thank you for walking, thank you for supporting, thank you for caring. And if you do come along, please say hello. I'll most likely be there with the amazing team of volunteers, probably helping out at the registration desk - I'd love to say hello!”
You can join Zakhia and make a difference for hundreds of families facing MND by taking part in Walk to Defeat MND Sydney. Find out more or register now at walktodefeatmnd.org.au/sydney
