Roderick Brown, his wife Danielle and their three young boys joined medical experts and community representatives in Canberra to send a strong message to government on rheumatic heart disease (RHD).
“We’re trying to stop it and send a message to all communities, to mothers and fathers who have kids be aware that this rheumatic heart disease is very preventable,” Mr Brown told reporters.
Earlier this month the federal government announced $4.6 million in funding to target RHD hot spots across the country, including $3.7 million to five Aboriginal Medical Services over three years to help combat the disease.
The Telethon Kids Institute will also receive $950,000 over two years to establish an ‘End RHD’ community approach across the Kimberley region in Western Australia where two-thirds of First Nations peoples suffer from the disease.
But advocates say more needs to be done to help families such as the Browns.
Every three weeks, Mr Brown drives five hours from his job at a remote station near Maningrida to take his three sons to get a painful, critical penicillin injection.
Curtis, Trey and Devon - who are aged nine, seven and three - all suffer from the condition, and their regular jab ensures they stay healthy.
“It’s very hard, sometimes I’m busy at work and sometimes I’m out bush and it’s very hard for me to come back and forth,” Mr Brown said.
“Curtis is the main one, I took him down to the Royal Melbourne Children’s Hospital a couple of years back."
The disease starts with a sore throat or skin infection, and if not treated, can lead to open heart surgery in kids as young as five.
It’s been all but eliminated from the rest of Australia and most wealthy countries decades ago, but remote Indigenous communities have among the highest rates of RHD in the world – even though the disease is preventable.
“We didn’t realise until the boys starting getting pain in their joints and we headed down to the clinic, and the doctors told us our boys had rheumatic heart disease,” Mr Brown said.
“It took us a while to understand, it was very sad.”
'Bravest' boys of Maningrida
Dr Bo Remenyi, the NT’s only cardiologist, says the three Brown boys “are the bravest of Maningrida”.
“All of these children have to go to the clinic every 21-28 days to get a really painful injection to keep them healthy, and as you can see all of these boys are in really good health,” she said.
“They run around, they play footy, they go to school, [and] they speak three languages fluently. Roderick and Danielle want to make sure their kids have the brightest future.”
Dr Remenyi says the government needs to take real action to tackle the disease.
“Australia needs to own this problem. It is our problem; it is our kids who are suffering needlessly,” she said.
'Fed up with talk'
Maningrida and other Aboriginal communities are taking local action to stop the devastating effects of RHD through community-led solutions, but West Arnhem Regional Council Mayor Matthew Ryan says governments need to step up.
“The Commonwealth… and Northern Territory governments need to invest and start listening to our people,” he said.
“Be serious about what’s happening in our communities – our kids are dying.
“Not tomorrow, not next year, we need to start looking at it now. I’m fed up with this… I’m fed up with talk, talk, talk – our people are suffering.”
End RHD co-chair and NACCHO Chair Pat Turner said a comprehensive and collaborative approach with communities and government is critical.
“Aboriginal leaders are here to let politicians know that we are ready to partner with them, and that with their support, ending the disease is achievable,” she said.