Marmigee Hand is the care provider for her sister's 14-year-old son Tristan, who has severe disabilities as a result of his mother's drinking during pregnancy.
"He wasn't developing normally like a normal child would," Mrs Hand said.
"How he tells people about how he feels has all been affected [by alcohol] during pregnancy." she said.
The Fitzroy Crossing woman features in a highly-sensitive documentary about Tristan, which she and community health leader June Oscar are taking to show the UN Permanent Forum on Indigenous Issues in New York next week.
The documentary coincides with Australia's first prevalence study on FASD or Fetal Alcohol Spectrum Disorders, the results of which are due later in the year.
As is the case for Tristan, these disorders rarely show their characteristic physical traits, such as small eyes and a smooth or thin upper lip.
For every one that does show these symptoms, nine more children like Tristan can go undiagnosed with neurodevelopment disorders leading to life-long learning and behavioral problems.
The high-risk groups are teen binge drinkers and some remote indigenous communities, although previous studies suggest that far more non-indigenous women drink during pregnancy than indigenous women.
Although those indigenous women who drink during pregnancy, tend to drink at high-risk levels.
But the study's early indications are that 50 per cent of women in Fitzroy Crossing drink during pregnancy, nine out of ten at high-risk levels.
June Oscar from the Marninwarntikura Women's Resource Centre in Fitzroy Crossing said it was the community who volunteered to shine a light on such a closeted issue.
"We've approached this work without naming and shaming the mothers, we've acknowledged that this is a difficult and highly-sensitive issue. It is their honesty that will make the difference for the child in the longer term,” Mrs Oscar said
The study mainly highlights the bravery of a remote indigenous community that is again facing up to challenging alcohol issues.
In 2007, Fitzroy Crossing was the first to heavily restrict alcohol sales resulting in 28 per cent reduction in alcohol-related incidents attended by police and a 42 per cent reduction in alcohol-related presentations at hospital.
Chief investigator on the study and professor of Paediatrics at the University of Sydney Medical School, Elizabeth Elliot, said that a clear diagnosis is a critical factor in schooling and care for affected children.
“The other importance of diagnosis in a child it that you might be able to offer help to the mother to help her address her alcohol problem and prevent the birth of another affected child,” Professor Elliot said.
Professor Jane Latimer is another chief investigator on the research project and also a producer of the Tristan's documentary.
“Tristan has been one of the few boys diagnosed early, but the biggest challenge he faces is learning difficulties,” Professor Latimer said.
“We see [in the film] the problems he has with every day tasks, in particular remembering things like what shoe goes on what foot, but we also see his parents struggling to care for him and also their fears they have for his future,” Prof Latimer said.
Mrs Hand hopes the screening of Tristan's documentary at the UN will open a dialogue with other indigenous cultures on FASD.
"Our whole community is learning about FASD and the project is giving us the awareness that we have a disability,” Mrs Hand said.
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