Listen Slowly – While I Still Have a Voice

When Anna Lalara talks about the future, she doesn’t begin with herself.

She begins with her children.

Her eldest daughter is sixteen. Her sons are seven and five. Like every mother, she imagines the lives they might lead, the places they will go and the people they will become. She wants them to grow up surrounded by opportunity, laughter and family. She wants them to know that they are deeply loved.

Then, quietly, another thought enters the conversation.

Each of her children has a fifty percent chance of inheriting Machado-Joseph Disease.

It is a reality Anna has lived with for as long as she can remember.

Growing up on Groote Eylandt, MJD was never an abstract diagnosis or something she learned about in a doctor’s office. It was woven into family life. She watched relatives live with it. She watched relatives die from it. She watched her father, Warren Lalara, gradually lose his balance, his coordination and eventually his ability to speak clearly, while remaining the same father she had always known.

“It was all I knew,” she says.

The disease has travelled through the Lalara family for generations, leaving heartbreak in its wake but never extinguishing the strength of those determined to confront it. Among them is Anna’s Aunty, Gayangwa Lalara, Deputy Chair of the MJD Foundation and one of Australia’s most respected advocates for families living with MJD. For decades, Gayangwa has helped ensure that the voices of affected families are heard, long before much of Australia had even heard of the disease itself.

Today, Anna has become part of that legacy.

Living with MJD herself, she has chosen not to retreat from the world but to speak openly about the disease and the questions it raises for families like hers. She works alongside the MJD Foundation, sharing her experiences in the hope that greater understanding will one day lead to better support, earlier intervention and, ultimately, a cure.

It is not an easy thing to do.

MJD is a progressive neurological disease that slowly attacks the body’s ability to coordinate movement. Walking becomes difficult. Balance disappears. Speech slows and gradually becomes harder to understand. Yet through every stage of the disease, a person’s thoughts, memories and personality remain.

It is one of the cruellest aspects of MJD.

The voice begins to fade, but the person does not.

That is why Anna often says something that stays with people long after they meet her.

“Listen slowly.”

It sounds simple until she explains what she means.

People living with MJD often need time. Time for their muscles to respond. Time for words to emerge. Time to finish a sentence. In a conversation that might normally move quickly, thirty seconds can pass before an answer comes. Sometimes longer.

Listening slowly means resisting the urge to interrupt. It means allowing silence to exist without discomfort. It means recognising that although speech may change, the person behind it never does.

For Anna, those two words have come to mean far more than the mechanics of conversation.

They have become a way of moving through life.

As her own symptoms have progressed, another conversation has become increasingly important.

Should her children be genetically tested?

The question sits at the intersection of science, ethics and motherhood.

Around the world, predictive genetic testing of children for adult-onset conditions remains the subject of careful ethical debate. Many health professionals believe children should be old enough to make that decision for themselves. Others recognise the unique circumstances faced by families living with inherited diseases and the value that planning and early support may bring.

Anna understands both perspectives.

But she also understands something few others ever will.

She knows what this disease looks like across generations. She knows what it means to lose family members. She knows what it feels like to wonder whether history will repeat itself.

More than anything, she knows time is precious.

“I want to find out before that happens,” she says quietly. “Before I deteriorate, so I’ve got a bit of a voice for what happens to my kids.”

There is no self-pity in the statement.

Only love.

Only a mother trying to do everything she can for her children while she still can.

Spend time with Anna and it becomes clear that MJD is only one part of who she is.

She laughs easily. She speaks proudly about her children. She talks passionately about the work of the MJD Foundation and the hope she sees in research, therapy and stronger support for families. She carries the weight of uncertainty, but she refuses to let it become the defining feature of her life.

What defines her instead is courage.

The courage to become an advocate after watching the disease move through her own family.

The courage to speak publicly about questions that have no easy answers.

The courage to imagine a future that might be different for her children.

For generations, families like the Lalaras have quietly carried the burden of Machado-Joseph Disease, often far from the national spotlight. They have lived with a condition few Australians have heard of, while helping shape much of what is now understood about it. Through their advocacy, their generosity and their willingness to tell deeply personal stories, they have helped ensure that other families will not have to face the disease alone.

Anna is now carrying that responsibility forward.

She knows better than most the cruelty of a disease that slowly takes away a person’s ability to move and communicate while leaving the person inside unchanged.

Yet she refuses to surrender her voice.

She is using it while she still can—for her children, for her family, and for every family living with Machado-Joseph Disease.

Perhaps that is what listen slowly really means.

Not simply waiting for someone with MJD to finish a sentence.

But finally hearing what families like the Lalaras have been trying to tell Australia all along.

Story by Tom Hearn