Honouring Tony: Cahlia’s legacy of hope in the fight against MND
Leaving a gift in your Will is one of the most personal decisions you can make. For some, it’s a way to honour a loved one. For others, it’s a chance to create a lasting change. To leave the world better than they found it. At FightMND, we know that every gift carries a story. A memory. A hope. A reason. And each one brings us closer to a world free from motor neurone disease (MND).
Cahlia is one person who has left a gift in her Will to FightMND. After losing her step-dad, Tony, to MND, she made a promise to help fight the disease that changed her family’s life forever. Here she shares her story and explains why she left a gift in her Will.
When Cahlia met Tony
It was 2007 when I met Tony. My mum picked me up from youth group one night and said she had someone she wanted me to meet and that he was hearing impaired. I practiced my sign language the whole way home. I knew the alphabet and practiced spelling “hello” right up until I got to the front door. Although I later learnt it’s just the good old faithful wave!
From the moment I met him, I adored Tony. I remember jumping around the kitchen with mum, both of us knowing she’d found herself a winner.
That one night turned into 17 beautiful years with Tony as my step-dad. He and mum soon got married, and he became the father figure I had longed for my whole life. That dream was made complete when he gave me the greatest gift. A little brother and sister, Savanah and Noah.
Growing up with Tony as a step-dad was the best. He was cheeky to his core and the ultimate prankster. His laugh could carry for miles – and most of the time, it was at his own jokes that no one else understood. He loved rollercoasters and dragged me onto them against my will every chance he got. He’d invent ridiculous sign language just to make me look silly and he teased me more times than I could ever count.
Tony was fun. But he was also kind. He gave the best hugs and never left you without saying “I love you”. He was driven and unbelievably talented at everything he put his mind to. He was everything a dad should be and I cherished every second I got to spend with him.
Tony’s MND diagnosis
Tony was just 46 when he was diagnosed with MND in 2023.
He died in 2024.
From diagnosis to final breath, all we got was 16 months.
Before Tony’s diagnosis, I had very limited knowledge of MND. I knew about Neale Daniher, the blue Beanies and the Big Freeze. But I didn’t know what was in store for my family. I didn’t know that I’d have to watch Tony go from walking, to using a cane, to being wheelchair bound within months. I didn’t realise how aggressive this disease is, what it would take from Tony or how quickly it could progress.
I remember Googling MND after that call with mum and seeing that on average, people live 27 months from diagnosis. So, when mum called me on August 20th, 2024 to tell me he had passed away, I remember sobbing “he was meant to have 27 months. We are supposed to have more time.” I couldn’t comprehend that not everyone gets that long.
I didn’t get to say goodbye to Tony. At least not in the way I have wished everyday for the past year. I messaged him the morning he passed, to organise a time to go and see him. He had already lost his battle to MND by the time I messaged. I thought I had more time. I thought I had 11 months left to see him, to make memories, say good-bye. But if there is one thing I’ve learned, it’s that MND is a beast. It’s not just a saying or a marketing campaign. It’s a beast that can strike anyone, anytime.
But my hope is that won’t always be true. That one day, we’ll have a cure. This hope is why I’ve decided to leave a gift to FightMND in my Will.
Leaving a gift in her Will
It’s strange to think about your Will at the age of 30. It almost feels silly and dramatic. At 30 you’re not thinking of the end. You’re not wondering how your assets will be divided, or how much you’ll accumulate before your last breath. But if losing Tony taught me anything, it’s that no one is promised tomorrow. So last year when I had the opportunity to create a free Will online through FightMND, it felt like a no-brainer.
As I went through the steps, it asked if I wanted to leave a gift in my Will to FightMND or another charity and I’ve never ticked “yes” so fast. It was the easiest decision I’ve made; to leave behind hope for a cure, hope for my siblings and hope for every other family facing what we went through. To leave a legacy of change is the greatest gift I could give. Of all the things I might be remembered for, I hope it’s that I helped bring us closer to a cure, towards ending this disease and fighting the beast.
Leaving a gift to FightMND in your Will means you’re not only helping to end the fight but also making a vow to create a lasting change. To leave the world better than you found it and to help ensure a cure is found within the next generation’s lifetime.
There wasn’t a cure in Tony’s lifetime. But my hope is that there will be one in mine. That I won’t have to live in fear that my siblings carry the MND gene, or that another loved one will be taken too soon by this disease.
I encourage you to join me in this hope – in making a difference that lasts beyond both our lifetimes. We don’t have to have all the answers, we just have to be willing to stand with those fighting.
Including a gift in your Will
Like Cahlia, you can help power the research aiming to defeat MND. Including a gift in your Will to FightMND is a meaningful way to drive breakthroughs in treatment, accelerate clinical trials and bring scientists closer to a cure in our lifetime.
Until 30 March, you can create an online Will for free through EveryWill (formerly Gathered Here), Safewill or Willed, with all platforms offering simple, step‑by‑step guidance. Please note a subscription fee applies for Wills created on Safewill and Willed after 12 months. You can conveniently find more information on our website.
For a confidential conversation about the impact your gift can make, contact our Gifts in Wills Coordinator, Eloise Shepherd, at [email protected] or (03) 7052 7004.
Be inspired by Cahlia’s decision and help fuel the research that gives families hope for a future free from MND.