Daisy Kitts, MND Advisor at MND NSW, gave this beautiful speech at our 2026 Day of Hope and Remembrance. We're thankful for the dedication she and her colleagues have in helping everyone we assist live the best lives possible while facing MND. Every day we feel privileged to hear our MND Community's stories as we stand alongside you on your MND Journey.
The Power of Stories
My name is Daisy and I am the MND Advisor for SLHD & SESLHD. I have been in this role since January 2022 and have had the privilege of working with and knowing many families during this time.
I was drawn to working in the neurodegenerative space following the passing of my grandfather from Parkinsons disease. Whilst it’s not the same as MND, there are commonalities with both conditions. I know what is like to watch a loved one grieve a series of losses – losses of function, of independence, of communication. Deeply affected by my grandfather’s challenges with Parkinsons Disease, I went back to university to do a Bachelor of Medical Science with a view to contributing to the care of people living with neurodegenerative conditions.
The work we do in the MND space isn’t easy work, but it can be incredibly fulfilling. Unlike other areas of health, there is no “cure” and ultimately, the outcome that we are striving for is for a good life living with the disease. Midway through my fifth year with the organisation, I find myself reflecting on the power of stories.
Dostoevsky famously asked, “How can you live and have no story to tell?” I have this tattooed on my arm as a reminder that the good, the bad, the sad, the ridiculous – all of it combines into a complex arc that makes each and everyone of us uniquely ourselves. Stories motivate us. Stories inspire us. Stories are an inherent part of being human and I believe we all have a story inside each of us.
I will always remember these stories fondly.
- The gentleman who resolutely hated the idea of an electric wheelchair until he realised he could speed away from his wife when it suited him. He’d always smile cheekily when she inevitably caught up and said he was supporting her cardiovascular health. And when he wasn’t looking, his wife would smile too.
- The widowed 80-year-old lady who wasn’t going to let MND stop her from getting on dating apps and having a seriously exciting romantic life. I’d often call her just to get an update – her love life was far more exciting than mine!
- The gentleman who I remember fondly with his walker, always equipped with a cold beer and a can of bug spray in the front pouch – just in case he needed to attend to an errant spider or some other dastardly creepy crawly.
I’ve been asked today to speak on behalf of the staff at MND NSW, which is no small ask. I can very proudly say that I work with a team of extremely dedicated, skilled and supportive people who genuinely care – not just about the people under our care, but also each other. The work we do can be challenging, and at times frustrating - particularly when faced with inadequacies and injustices of systems that SHOULD be helping people but are not designed to do so for complex conditions like MND. I can’t speak to the motivation of my colleagues, because each of us have our own reason for doing the work we do. But I can say, that in my case, there is no higher calling than helping people to live a good life, nor is there any better reward than the privilege of sharing in your stories.
I’d like to finish up on a slightly more serious note with a quote from Atul Gawande’s book, Being Mortal1: A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognise that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
And so today, I light a candle for those who we’ve lost, but whose stories remain alive within us, for those who continue to battle on, writing their stories, and in hope that we will continue to strive for a happy ending – one which results in better outcomes for people living with MND
References
- Gawande, A. (2014). Being mortal: Medicine and what matters in the end. Metropolitan Books.
