Hi, my name is Chloe Clugston, I am a mother to our Beautiful Boy Bentley who is 5 years old and living with Hunter Syndrome. 

I am petitioning to make the 3rd week of October each year to be formally recognised in Victoria as Hunter Syndrome Awareness Week and I NEED YOUR HELP!!

Hunter syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects less than 2,000 individuals worldwide. 

Individuals with Hunter syndrome have a defect in the gene that normally causes the body to make the enzyme, iduronate-2-sulfatase, which is responsible for the breakdown of cellular waste called glycosaminoglycans or GAGs – essentially the cells garbage or waste. Without that necessary enzyme, the accumulation of these GAGs leads to progressive damage throughout the entire body and its systems, affecting development, organ function and physical abilities. 

Knowing that your child’s life could be dramatically shortened and will be filled with medical challenges is every parent’s worst nightmare, yet this is the reality for families like ours.

Bentley endures a gruelling, four-hour return journey to Ballarat every single week, a relentless routine just to receive the life-sustaining Enzyme Replacement Therapy, Elaprase.

Because Elaprase is currently the only approved treatment in Australia, these exhausting weekly infusions are a reality not only for himself but also for his Hunter Brothers that they will need to face for the rest of their lives.

Elaprase cannot cross the blood-brain barrier. While it protects the body, it leaves the devastating neurological progression of Hunter Syndrome entirely untouched.

In more positive news, In March of this year, the United States FDA approved a groundbreaking new drug - Avlayah. Avlayah successfully breaches the blood-brain barrier. For children fighting the neurological decline of Hunter Syndrome, this is not just a scientific milestone, it is literally their lifeline. 

While Avlayah is not yet approved or accessible in Australia, its existence changes everything. It transforms a distant wish into hope, proving that a future where boys with Hunter Syndrome can access the complete protection they deserve and so desperately need. Whether this breakthrough will reach Australia remains unknown.

This is precisely why Hunter Syndrome families must be seen and heard. By bringing our stories to light, we ignite the awareness, knowledge, and relentless advocacy needed to fight for our Children's futures and turn this hope into reality.

Common medical conditions often have a much larger audience, with access to regular research and large scale fundraising campaigns. Rare diseases like Hunter syndrome often remain invisible. Because our patient population is so small, affected families cannot generate widespread visibility on our own. We need our community to stand with us, learn our children's stories and understand their daily reality.

With only around 1 in 100,000 to 150,000 births resulting in Hunter Syndrome, raising awareness is urgently needed for better diagnosis and treatment. Awareness leads to more funding and research opportunities, and, more importantly, provides support and hope for families affected by this relentless disease. This is why we are urging the Victorian Government to officially recognise the third week of October as Hunter Syndrome Awareness Week.

A small community should not mean an invisible one. And I refuse to let it be a quiet one.

I hope you can understand the importance of what one signature, a share and a couple seconds of your day would mean for families like ours.

Thank-you for taking your time to read about Hunter Syndrome and why it is so important to us and our Beautiful Bentley Boy.