When Laura Ferrie talks about Liyandra, she doesn’t begin with cancer. She talks about laughter. She describes a woman with a mischievous sense of humour who enjoys making people smile, someone who loves spending time with her husband Justin and their four sons, and who approaches life with a quiet determination that has carried her through every stage of Machado-Joseph Disease. 

Physiotherapy isn’t simply another appointment in her week. It is something she genuinely looks forward to because she can feel herself getting stronger. Speech therapy helps her maintain her independence, and every opportunity to spend time on Country with family reminds her of who she is and where she belongs. Like so many people living with MJD, Liyandra has learned that staying stronger for longer isn’t about overcoming the disease. It is about making the most of every day and holding tightly to the things that give life meaning.

Then she hears that word – cancer. The diagnosis is frightening for Liyandra, but for Laura another reality quickly comes into focus. Treating cancer while living on Groote Eylandt is never as simple as attending appointments. Every consultation, every scan and every treatment session will require another journey to Darwin, another period away from home and another layer of planning. For someone already living with a progressive neurological condition, the path to recovery is suddenly measured not only by medical decisions but by whether every practical obstacle can be overcome.

It is easy to think of healthcare as something that begins when a patient walks through the doors of a hospital. In remote Australia, it often begins much earlier.

Before an oncologist can discuss treatment options, flights have to be booked on limited commercial services. Patient Travel approvals need to be in place. Accessible accommodation has to be secured. Mobility equipment must be available at the other end, and local clinics, specialists and pharmacies all need to be working from the same information. None of these tasks appear in a treatment plan, yet every one of them has the potential to determine whether treatment proceeds as intended.

Laura has seen enough journeys like this to know that it is often the smallest details that matter most.

One of the first challenges involves Liyandra’s monthly injections. Left unchanged, the appointments mean hours of waiting in a busy clinic for a procedure that takes only minutes. Working with local health staff, Laura helps arrange an early Thursday morning appointment instead. It seems like a modest change, but it transforms the experience. Less waiting means less fatigue, less stress and one less reason for treatment to become an exhausting ordeal. It is a reminder that improving healthcare is not always about doing something extraordinary. Sometimes it is about making one practical change that allows someone to keep moving forward.

As treatment continues, new challenges emerge. Medication changes made in Darwin are not always reflected in local records. Specialist letters are needed before flights can be confirmed. Escorts have to be organised for extended periods away from home, then rearranged when family responsibilities change unexpectedly. Each issue is manageable on its own, but together they create a constant stream of decisions, phone calls and follow-up that sits quietly behind every appointment Liyandra attends.

Looking back, Laura doesn’t remember these moments because they were dramatic. She remembers them because they were relentless. A missed phone call, an incorrect medication list or a delayed booking could quickly become another barrier standing between Liyandra and her treatment. Solving those problems became part of the journey itself, one practical step after another, each bringing her a little closer to the next appointment.

For Laura, this work has never been about organising calendars or confirming travel arrangements. It is about making sure that someone living hundreds of kilometres from specialist care has the same opportunity to complete treatment as anyone living around the corner from a major hospital. It is about removing the barriers that most Australians never have to think about, so that Liyandra can focus on the one thing that matters most: getting well. The longer the journey continues, the more Laura begins to appreciate just how much healthcare depends on the things that happen beyond the walls of a hospital.

One conversation in particular has stayed with her.

“My experience is they’ve never called her,” Laura says, referring to the local clinic’s responsibility for organising Liyandra’s monthly injections. “Because we’re on top of it, I think they relax a little bit around our clients, but also in saying that, if we just left it to them, the stuff doesn’t happen.”

It isn’t a criticism of the people working within the health system. Every organisation is focused on doing its own job well. Specialists concentrate on cancer treatment. Local clinics provide primary healthcare. Patient Travel organises transport. Disability providers coordinate supports. The challenge is that nobody sees the entire journey through the eyes of the person making it.

For Liyandra, every appointment depends on all of those pieces coming together at exactly the right time. If a specialist’s letter arrives late, flights cannot be confirmed. If accessible accommodation isn’t available, another solution has to be found. If medication records don’t match, someone has to identify the discrepancy before treatment continues. None of these tasks are dramatic in isolation, but together they become the invisible pathway that carries someone through months of treatment.

Laura often reflects on another woman she supported during a similar period.

Gwen was also travelling from Groote Eylandt for treatment, but her experience highlighted just how much additional planning Machado-Joseph Disease can bring. Gwen was able to negotiate buses, stairs and unfamiliar environments independently. Liyandra could not. Every journey required accessible transport, mobility equipment and someone thinking several steps ahead. The comparison reinforced an important lesson. Cancer may have been the diagnosis, but disability shaped almost every practical decision surrounding the treatment itself.

Looking back now, it would be easy to tell Liyandra’s story through medical milestones alone. There was the diagnosis, the surgery, the treatment and, eventually, the words every family hopes to hear.

Remission.

For Laura, however, those milestones tell only part of the story.

She remembers a diary filled with appointments stretching across months. She remembers Friday afternoons spent making sure flights could be secured before the weekend. She remembers phone calls to specialists, clinics and Patient Travel, each one solving another small problem before it became a larger one. She remembers family members stepping forward to support Liyandra on her journeys, and she remembers the determination that never seemed to leave her, no matter how demanding the road ahead became.

None of those moments would ever appear in a medical file. They weren’t part of the surgery. They weren’t part of the chemotherapy. Yet each one became part of the journey that made successful treatment possible.

Today, Liyandra is in remission.

Those words belong first and foremost to her. They reflect her courage, her resilience and her willingness to keep turning up, appointment after appointment, despite the challenges of living with Machado-Joseph Disease hundreds of kilometres from specialist care. They also reflect the strength of her family and the quiet persistence of the many people who walked beside her, removing one barrier after another so that treatment could continue.

The MJD Foundation often speaks about helping people stay stronger for longer. Stories like Liyandra’s remind us that strength takes many forms. Sometimes it is found in a physiotherapy session or the determination to keep walking. Sometimes it is found in the support of family, or in the reassurance that someone is there to help navigate an unfamiliar system.

And sometimes, strength is measured in something much simpler. It is measured in the decision to keep going.One appointment. One journey. One step closer to hope. One step closer to remission.

Story by Tom Hearn