Youth Advisory Group Q&A

The Youth Advisory Group (YAG) is a new initiative, set to give very special siblings between the ages of 14 to 25 a platform to be heard. We spoke with Very Special Kids’ sibling, Jude about the new program and what it means to him to have the chance to join the conversation. 

In what way has having a sibling with a life-limiting condition changed your life?  

When some people go to the hospital or maybe the emergency room, it feels slightly stressful, or it feels very cramped. The smell of hand sanitiser might be a new thing to most people in 2020 and 2021 because of COVID-19, but for me, it’s just the smells of my childhood.   

Since I was 13, when my brother Joel passed away, I’ve learned a lot about myself. I learned a lot about life in general. It can sometimes be difficult to separate what has changed my life because of my brother, and what I have learnt from just growing up. 

What does it mean to you to be part of the Very Special Kids community? Has it helped to connect with other Very Special Kids’ siblings? 

I count Very Special Kids as a second family. Not just because of the support, but because of the genuine friendships that I’ve developed with volunteers and the other siblings who understand what I’m going through. The conversations I’ve been able to have and the relationships I’ve been able to build with different people has been amazing.  

A lot of people don’t understand that even when I’m smiling and I’m genuinely having a good time with them, there’s always a bit of sadness. Kind of just lingering there. But Very Special Kids is one of those places where I feel like I can truly be happy and be myself, having a great time, there is just a different type of understanding. 

Why do you think it’s important for young people to have a say? 

In this decade, young people are a bit more vocal and want to get involved. As the youth who are being supported by Very Special Kids, we can talk to other youth members, and understand what they want out of each program. Let’s say, I’ve gone to a camp, I’m able to see what the other youth members are experiencing and can take that experience back to the group. It really can allow events to be tailored to better fit the needs of different youth. Which is really awesome. 

Every sibling has a unique perspective and experience, why do you believe diversity is important in decision making? 

It is important to have diversity, especially in age, but also in experiences.  Each person is so different, and those different voices are going to make the experience much more inclusive to everyone. 

What excites you most about joining the Youth Advisory Group? 

It couldn’t be a better cause, or a better group to volunteer with than Very Special Kids, because it’s so close to my heart. Personally, Very Special Kids has impacted my life so much, so to give back in this way and be able to have the privilege of having a say means a lot to me. 


YAG meetings will be held bi-monthly and can be attended by siblings from across Victoria. We want you to lead us and advocate for what is important to you, so we can work to make it happen. 

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If you ticked YES to all these boxes than take the next steps and apply to make a change! Please complete the expression of interest form here by Friday 18 February and we will be in contact soon. 

If you have any further questions about the Youth Advisory Group, please contact Jess at or Damienne at