Lynette Bullio's son Jalil was just seven years old when he found out he would need painful injections each month until at least his 21st birthday.
The Cairns boy was limping around but he and his mother thought it was because he had tripped over at school.
When, by the end of the week, Jalil couldn't even manage a short walk from his mother's car to the school gate, Ms Bullio knew it was something more serious.
Jalil, now 11, was diagnosed with rheumatic heart disease.
He is one of thousands of mostly Aboriginal and Torres Strait Islander people across northern Australia with the condition that was largely eradicated in Australia's urban non-Indigenous population about 60 years ago.
"It still is traumatic, I think, when I talk about it and realise how huge this disease is," Ms Bullio said.
"I start getting a lump in my throat."
Not just a remote problem
Ben Reeves, a paediatric cardiologist at Cairns Hospital, said while the disease was often associated with isolated communities he still saw new cases of rheumatic fever in Cairns children every week.
"This is not purely due to remoteness," Dr Reeves said.
"It's a lack of access to appropriate facilities and it's a lack of awareness among the community and some health staff and we're trying very hard to turn this around."
Acute rheumatic fever begins with a streptococcal infection that causes a sore throat or skin sores.
The body's immune system then targets its own tissues to fight the infection, causing severe joint pain and damaging heart valves.
Children aged 5 to 15 are at the highest risk and repeated infections can lead to rheumatic heart disease.
Housing stress is another challenge, with overcrowding a major risk factor for the spread of the strep A germ.
"It's a terrible shame for Australia that we have elements of our population that are not receiving the top standard healthcare and are suffering from an entirely preventable disease that we would normally associate with third world countries," Dr Reeves said.
New strategy 'just the start'
An estimated 148 Aboriginal and Torres Strait Islander people in Queensland will die of the disease by 2031 without further action.
In March, the ABC's Four Corners exposed instances where young people with rheumatic heart disease in the remote community of Doomadgee died after being turned away from hospital.
The Queensland government has committed $4.5 million over three years to implement a plan it hopes can improve access to care and reduce the condition's prevalence.
The plan, developed in partnership with Aboriginal and Torres Strait Islander community-controlled health organisations, allocates $2.8 million specifically for 10 communities in North Queensland.
"We need the health workers on the ground, we need First Nations health workers on the ground, going into these communities, educating the communities, actually educating our health workers," Health Minister Yvette D'Ath said.
Dr Reeves welcomed the strategy but said it was "just the start of what we need to prevent this disease overall".
"What we need is a whole-of-government response looking at housing, health, and education to consign this disease to the history books," he said.
Ms Bullio, whose son has access to transport, a good education, and a comfortable home said it was also important for more First Nations people to feel comfortable talking about the condition she described as a "silent killer".
