My name is Natarsha Satalic,

 I am writing to you as a South Australian and, more importantly, as a family member of a child living with Hunter syndrome.

I am asking for your support in having the third week of October formally recognised in South Australia as Hunter Syndrome Awareness Week.

Hunter syndrome, also known as Mucopolysaccharidosis Type II (MPS II), is an extremely rare, progressive and life-limiting genetic disorder. It is caused by a deficiency of the enzyme iduronate-2-sulfatase, which results in harmful substances called glycosaminoglycans accumulating throughout the body’s cells and organs.

Over time, this accumulation can cause progressive damage throughout the body, affecting the heart, lungs and airways, bones and joints, hearing, mobility and other organs. In the more severe neurological form of Hunter syndrome, the brain is also affected, resulting in progressive cognitive decline and the loss of skills a child has already learnt.

Hunter syndrome occurs almost exclusively in males and is extraordinarily rare. An Australian Government expert review estimated the prevalence of MPS II in Australia at only 0.13–0.3 people per 50,000 population. Because the affected population is so small, awareness and understanding of the condition remain extremely limited.

For children with the severe neurological form of Hunter syndrome, the reality is devastating. Published medical information places life expectancy for the severe form at approximately 10–20 years, although the course of the disease varies considerably between individuals. 
For my family, these are not simply statistics.

My seven-year-old stepson, Cole, has MPS II.

We see firsthand what Hunter syndrome means for a child and for the people who love them. We see the appointments, procedures and treatments. We see the uncertainty that families living with an extremely rare disease carry every day. And we see an incredible little boy who deserves every opportunity for a longer, healthier future.

At present, the main disease-specific treatment available to eligible Australian patients is Elaprase (idursulfase), an enzyme replacement therapy administered by intravenous infusion every week. For patients who rely on this treatment, those weekly infusions become an ongoing part of life.

Importantly, traditional enzyme replacement therapy has significant limitations, particularly when it comes to neurological disease.

In March 2026, the United States FDA approved Avlayah (tividenofusp alfa) for the treatment of neurological manifestations of Hunter syndrome in certain paediatric patients before advanced neurological impairment. It represents a major development because it is an enzyme replacement therapy designed to reach the brain as well as the rest of the body.

Yet this treatment is not currently available as a routinely approved treatment in Australia.

For families affected by Hunter syndrome, developments such as this bring enormous hope, but they also highlight the disparity in access to emerging treatments. Families should not have to consider uprooting their lives and living overseas simply to pursue treatment options that are unavailable to their children in Australia.

 

This is why awareness matters.

For common diseases, there are large communities advocating, fundraising and demanding research and access to treatment. With an ultra-rare disease such as Hunter syndrome, there are simply not enough affected families to create that same level of public visibility on their own.

Our children need other people to know their names, understand their disease and stand beside them.

Recognising the third week of October as Hunter Syndrome Awareness Week in South Australia would give families like ours an important platform to educate the community about MPS II, encourage earlier recognition and diagnosis, support affected children and families, promote research, and draw attention to the urgent need for equitable access to emerging treatments.

Recognition would also send a powerful message to families living with rare diseases: that although their community may be small, their children are seen and their lives matter.

For our family, Hunter Syndrome Awareness Week would be about Cole. But it would also be about every Australian boy living with MPS II, every family navigating this diagnosis, and the children who will be diagnosed in the future.

I respectfully ask whether you would be willing to support and advocate for the formal recognition of the third week of October as Hunter Syndrome Awareness Week in South Australia.

Awareness may sound like a small step, but for an ultra-rare condition, awareness creates visibility. Visibility creates advocacy. Advocacy drives research, funding and access to treatment. And for children with a progressive disease where time is incredibly precious, those things matter enormously.

Thank you for taking the time to read about Hunter syndrome, and about Cole.

Kind regards,