Bronte has Lou Gehrig’s disease and there is no cure

In the year after her daughter Brontë was diagnosed with amyotrophic lateral sclerosis (ALS), Bronwyn Cousins did not sleep.

After five years, rest is just as little. Bronwyn sleeps with a monitor next to her bed so she knows when her daughter needs her.

Brontë and her mother Bronwyn Cousins at home.Simon Schluter

14-year-old Brontë wakes up every hour, often in excruciating pain.

“He’ll wake up to move, have a drink or pull the doona over his shoulders because he can’t do that, so I roll him from side to side,” says the 53-year-old single mother of two.

“One of the things I didn’t know was that with neuromuscular disorders, your hips can pop out of their sockets because they’re not held tight enough in their sockets, so when I turn him, there’s this awful dry cracking sound of his hips moving in their sockets, and he’s in a lot of pain, so he keeps waking up.”

ALS is a fatal, progressive disease that attacks motor neurons in the brain and spinal cord. It’s the same disease that killed AFL great Neale Daniher last month.

Brontë is the only child living with incurable motor neurone disease in Australia.

Juvenile ALS is rare; It accounts for 0.1 percent of ALS cases worldwide. There is a lack of research.

There is no data on life expectancy. At night, when the world goes dark, Brontë is afraid of dying.

“I think as she becomes more aware that she’s getting worse, it’s happening quite quickly; she’s currently having a lot of panic attacks at night,” Bronwyn says.

This young man has a sharp sense of humor and an obsession with British history. He wants to be a family lawyer when he grows up and dreams of a future that will never come.

“Sometimes I can’t believe I’m discussing this with my 14-year-old… I’m sitting here and watching my child die and trying to give her the best life I can,” Bronwyn says.

Sydney neurologist Nathan Pavey treats hundreds of MND patients each year.

“It’s universally fatal and therefore universally devastating for families… And of course young people are amplifying it.”

MND Victoria chief executive Mary-Jane Stolp says it’s important that friends and family of people with MND don’t withdraw because the condition is uncomfortable or conflicting.

“Caregivers of people living with MND report a lower quality of life, which means community support is really important,” says Stolp.

Pavey says more funding to research the causes of MND is the only hope for patients. It is also the fastest way to find treatment.

“We need to focus on research into the underlying mechanisms and causes of the disease, as well as clinical treatment trials,” he says. “The real problem you’re going to have with juvenile ALS is how rare it is, and clinical trials need a lot of studies.”

Brontë is too young to participate in any clinical trials.

Earlier this month the federal government announced priority aged care support for people living with MND, with the aim of reducing waiting times from up to 10 months to less than a month.

But the changes do not take into account young people with MND. Federal Health Minister Mark Butler’s office has been contacted for comment.

Brontë’s weight decreased as eating became very difficult due to the rapid wasting of the muscles in the mouth, throat and chest, which is common among patients living with MND. A feeding tube was inserted into his abdomen. This was one of the most painful procedures he could remember.

The Jellycat collection lines the shelf above Brontë’s bed. These items mark every major surgery the 14-year-old has had since his diagnosis in 2021. There are 32 of them.

FightMND was founded by Daniher in 2014 after his diagnosis and has raised more than $157 million for MND research and support. It is holding its annual Big Freeze on Monday, the biggest fundraising event for MND in Australia.

Bronwyn hopes the renewed interest in MND, thanks to the work of people like Daniher and the public diagnosis of South Sydney Rabbitohs player Jai Arrow last month, will inspire people to help families whose lives have been changed forever by the diagnosis.

“I don’t want anyone to get this disease. I really don’t,” he said.

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