Speech welcoming Juvenile Arthritis Foundation Australia to Government House

There are so many reasons to host you here at Government House today. 

First of all, because I get to see my friend, Professor Colagiuri who, with Professor Stephen Colagiuri, are co-founders of Juvenile Arthritis Foundation Australia. 

Most important are the children and young people and the families. 

You are our most distinguished guests today, some of the most important people we ever invite into Government House.

I know you have taken time away from everything else you do in your life, and some of you have travelled a long distance to be here.

You are so very welcome as some of our most special guests. 

Your parents also matter to us very much, too. 

Your parents are your vital advocates, and you are children who are loved by your parents and by JAFA

They are your carers, supporters, and encouragers.

And of course, JAFA is working to make sure that we have you at the centre of our thoughts when dealing with some pretty complex issues. 

I like to say that Government House is a place of warmth and peace, where everybody is welcome, and that's especially the case today. 

It's where we love to gather and share stories that are important to you and they're important for me to hear, so I can then take those stories where they need to be heard to people who often don't hear your stories. 

That's part of the job of the Governor-General.

During Juvenile Arthritis Week, and, really every week, the Juvenile Arthritis Foundation Australia story is one that deserves the nation's attention.

Certainly the attention of those who can make change.

And that's why you come to Canberra, because this is the place where we can get things to change, and important people to listen. 

So I'm delighted to be a patron. 

I'm very delighted to be wearing the JAFA badge and to say that I'm one of you. 

I'm very proud to support you in all the work that you do to raise awareness of juvenile arthritis. 

I know JAFA’s story started with Chloe -- a wonderful young woman whose grandparents cared so much about a system that let Chloe down that they put all their efforts to do something about it. 

That is a very powerful story. 

And, Chloe, you've done something that has changed the country and the world. 

I want to shout out to you as well for inspiring not just your grandparents and your parents, but certainly others. 

I want to understand a lot more from your words and your perspectives, what it's like to have juvenile arthritis, what it does to your lives, what it means to your families, and what it means within your communities. 

It's important that I know. 

That hear that directly from you. 

My journey with JAFA really starts today, with this event, but for many of you in this room, it started a long time ago. 

Ruth and Steven, I know you were motivated, as I said, when you encountered the absence of science and support for children with juvenile arthritis and through a direct personal experience in your family.

Your care for our community generally, and fixing a broken system, epitomises why I chose to put care and kindness and respect, throughout my term as your Governor-General, at the centre of everything that I do. 

So, it's my hope that, together, we can fulfil your vision of not just raising awareness and ultimately finding a cure and building a world in which children and young people just don't experience arthritis, that is something worth aiming for. 

But I also want to be part of the work you are doing to link children with arthritis with their peers. 

So, there's a community supporting the parents and older children and helping the very difficult navigation of a very complex health system. 

I want to reflect for a moment on a beautiful song, ‘Butterfly’, by Dayna Mattchewson, JAFA's first Youth Ambassador.

Your lyrics draw such a moving and sensitive picture of life with juvenile arthritis. 

And I know that the power of song and music can often change things in ways that nothing else can. 

So, thank you, Dayna, for your beautiful song. 

You touch on the highs and lows, the outward smile and the inward tears, the moments of distress and the times to celebrate freedom from pain or limitations. 

When you sing about wanting to fly like a butterfly, I think you echo the desire of every child, all the children in this room, but every child, who just want something very simple – to be healthy and strong and free – free in your bodies. 

Your song is a wonderful contribution to that, not only as Ambassador, but to help those of us understand what it feels like to be you. 

It is hard to empathise sometimes, but I think your song gives us a way in that moves us all. 

So, thank you, and congratulations on your role as an ambassador. 

Today, in juvenile arthritis week, along with all of you, we're going to commit to doubling our efforts to make sure that health and strength are within reach of every child living with juvenile arthritis, and that a pathway to a cure does become clear.

So you can fly, as Dayna says, like beautiful butterflies – as high and as far as your hopes and dreams, take you.

I'm delighted to be your patron. 

I hope that this afternoon fills you with optimism and hope, and that we do set about meeting JAFA’s goals.

And I'll come back to where I started – Ruth, I could never have imagined, when I first met you and Steven, that we'd be here these years later, supporting JAFA, supporting you, celebrating the work that's going on in JAFA.

Thank you all for coming.