Recognise Hunter Syndrome Awareness Week in Victoria — Give Our Children a Voice 💙

My name is Stefanie, and I’m a mum to a beautiful little boy named Bexley, who lives with a rare, progressive and life-limiting genetic condition called Hunter syndrome (MPS II).

At just 4 1/2 years old, my little boy has already faced more medical challenges than most people will experience in a lifetime.

Hospital appointments, surgeries, endless therapies, medical procedures and challenges that no child should ever have to face.

And yet, through it all, he continues to show us what true strength looks like.

For the past two years, our family has been navigating a reality we never imagined. A reality filled with uncertainty, constant worry and the heartbreaking knowledge that the future we once pictured for our little boy may look very different.

Hunter syndrome is an extremely rare genetic condition that affects multiple organs and systems throughout the body. In its severe form, it also causes progressive neurological deterioration, often referred to as childhood dementia.

It can slowly take away my boys ability to walk, talk, learn and do the things he once could.

There is currently NO CURE.

As a parent, there is nothing more heartbreaking than watching your child face battles you cannot fight for them. Knowing that no matter how much you love them, how hard you advocate or how much you do, you cannot protect them from everything this disease brings.

But Bexley is so much more than his diagnosis.

He is a little boy with a beautiful personality, a cheeky smile and a whole world of love surrounding him.

He is loved beyond words. And he deserves to be seen.

That is why I am calling on the Victorian Government to officially recognise the third week of October each year as Hunter Syndrome Awareness Week.

Not just for Bexley, but for every child and family living with this devastating condition.

Awareness matters.

It means helping medical professionals recognise the early signs of Hunter syndrome, giving families a better chance of receiving a timely diagnosis.

It means encouraging research, improving understanding and advocating for access to treatments and support.

It means acknowledging the enormous physical, emotional and financial toll that rare diseases can place on families.

And perhaps most importantly, it means reminding families like ours that we are not invisible.

Rare should never mean forgotten.

Our kids may be few in number, but their lives matter just as much as anyone else’s.

They deserve recognition. They deserve understanding. They deserve a voice.

We are asking the Victorian Government to formally recognise Hunter Syndrome Awareness Week annually, during the third week of October, and help bring greater awareness to this rare and devastating disease.

Because awareness can lead to earlier diagnosis.

Awareness can inspire research.

Awareness can create change.

And for kids like Bexley, every bit of progress matters.

Please sign and share this petition to help us give Hunter syndrome families the recognition and awareness they deserve.

For Bexley. For every kid fighting Hunter syndrome. And for every family whose world has been changed by this diagnosis.

💙 Together, let’s make sure our children are never forgotten.