Skye Gatt

People talk about Motor Neurone Disease but you don’t really understand the impact it has until you are part of the experience first hand.

My beautiful Nan has given me permission to share our story — her story — in the hope that it might help someone else, or at the very least, shed light on just how cruel and heartbreaking Motor Neurone Disease can be.

Christmas time in 2023, my mum, Nan and myself started noticing subtle changes to nans speech. In true Nan fashion and being as stubborn as she is, refused to go to the doctor and put it down to the fact that she needed to get her teeth removed and get dentures. When she went to the doctors (only to get a referral for said teeth extractions) they sent her off for a scan to rule out a stroke as even they had noticed her deteriorating speech. When the results returned in April 2024, the GP told us that she had ‘a reduced blood flow to her brain and would likely develop dementia down the track’ due to this. 

That news alone was hard to swallow. But it was only the beginning. She was referred to a neurologist for more testing, and suddenly she became a "learning opportunity" — a rare case, a puzzle, a body with symptoms no one could quite piece together.

Over and over, students examined her — respectful, eager, curious — and they kept saying the same things: “severely dysarthric,” “muscle wasting,” “wasted tongue,” “upper and lower motor neuron signs.” Yet we were told not to take anything seriously because these were just students, still learning. But how do you ignore something that's being said repeatedly — something your heart is already starting to fear?

A month later, Nan attended the hospital for what she believed was an outpatient appointment, which ended up being a hospital stay. This was to complete a range of different tests and have countless more neurologist reviews and of course more students come to assess. During this time, Nan went through a rollercoaster of emotions as did myself and my mum. We left that admission with still no answers as to what was happening and why she was still deteriorating, we did however receive a few other diagnoses which have gone hand in hand. We left exhausted and confused, with only the promise of more scans and a six-month wait before the next review.

Nan was next expected to see the neurologist in December however we received a call to attend in early September with only a few days notice. There was some miscommunication with this as we thought we were just seeing the allied health team. Nan was reviewed by another doctor (not the usual neurologist) who was fresh out of their studies. 

Eventually, a senior neurologist was called in. He did a physical assessment and delivered the words that shattered everything:

“Motor Neurone Disease”.

But he didn’t tell her. He looked at me when he said it — like she wasn’t even there anymore. As if losing her voice meant she had lost her place in the room. I broke down. Through tears, I asked Nan if she’d heard what he said. She just smiled and shook her head, confused. I begged the doctor to say it again — to her this time. When the truth sank in, she was stunned. Silent. In disbelief.

From there, it all escalated quickly. We were referred to Calvary Bethlehem, though even that was messed up… the paperwork was wrong and rejected. Thank God for our MND Victoria caseworker, who fought tooth and nail to fix it. She’s been our lifeline in this mess, helping us get essential equipment and support we never even knew existed. She’s the one who sat with us through all the tears and explained what nan will likely experience in the future and educated us on different types of MND. She’s the one that told us that nan has Bulbar Motor Neurone Disease. 

Nan was living two hours away from me. But after hearing that the average life expectancy for MND is just 2.5 years, she made a decision — one that still breaks my heart: she sold her home and moved to be closer to us. She did it so she could spend what time she has left surrounded by love, not distance.

In just three months, our lives flipped upside down. Nan was fitted with a feeding tube, started using a ventilator, and gave up the simple joys she loved — like her hot chocolates or a good porterhouse steak. She’s now nil by mouth, and I see the longing in her eyes every time she remembers what it felt like to enjoy those small pleasures.

It is a journey that has changed all of our lives forever and we still don’t understand why and likely never will. 

Nan writes now, since her voice has been taken. Every time she meets with a new health professional, the same desperate questions appear on the page:

“Why me?”

“How did this happen?”

“How long do I have?”

The answer is always the same: “We don’t know.”

Nan has been described by so many as “fiercely independent”, and that couldn’t be more accurate. It’s what makes her extraordinary — and what makes this disease so cruel. Her spirit hasn't dimmed, but her body continues to betray her. She now uses a frame for short walks (reluctantly), a wheelchair for outings, and is learning to use an electric one — determined not to give up her freedom without a fight.

Watching her fade in this way is gut-wrenching. It’s unfair. It’s brutal. This woman — my Nan — helped raise me, taught me things that only she could and has helped shape the person I am today. She has already endured so much pain and grief in her life… and yet, here we are again, facing another mountain with no clear path to the top. 

Nan keeps saying that she doesn’t want to be a burden. But she’s not. She never could be. This is what family does. We show up, we hold each other up, and we walk through the darkest valleys together no matter what. 

I made a promise — to her and to myself — that I will fight alongside her with everything I have. I will raise awareness. I will push for answers. I will do everything in my power to make a difference — not just for Nan, but for everyone facing this devastating disease.

If you can, please consider donating to the cause. Share our story. Help us find hope, where there currently is none. Because one day — maybe soon — we could discover a breakthrough. And no other family will have to watch someone they love disappear like this.