The Youth Advisory Group (YAG) is a new initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.

In this series, our Youth Advisory Group members have interviewed each other to learn a bit more about their day-to-day life experiences and time with Very Special Kids.  

Could you give me your name, age, and current level of education? 
My name is Kristen and I am currently 17 and in my final year of high school.

What is a fun fact about yourself? 
A fun fact about me is that I love camping and hiking. Earlier this year I was lucky enough to  lead a multi-day hike along a segment of the Great Ocean Walk.

If you feel safe doing so, could you share a bit about your sibling and their story?  
I am connected to Very Special Kids through my older sister Kasey-Anne. Growing up we were always close as she was only 16 months older. She always loved talking to people and being surrounded by friends and family.  

Despite being so young, she was amazing at playing the violin. In April of 2011 she was admitted into hospital and the doctors were unable to accurately diagnose her until it was too late. She passed away in June of 2011 with Non-Hodgkin’s Lymphoma Anaplastic, less than a month after her 8th birthday. 

What’s been a highlight that’s stayed with you from your time involved with Very Special Kids? 
A highlight that has stayed with me from my time involved in Very Special Kids, is Mittagundi in 2019. 

Despite attending countless Very Special Kids’ events since 2011 and all previous events being such unique experiences and offering a sense of community and understanding that only Very Special Kids can bring. The sense of connection and support that was fostered at Mittagundi, was something that I have never experienced before.  

Over the days that we spent at Mittagundi we were all able to express gratitude, help each other overcome challenges, and get to know all the adolescents in a way that is completely different to all other events I’ve attended. I can truly say that through our time at camp we created our own Mittagundi family. One where we could share our experiences, our stories and our siblings, with others who understand in a way that many of our friends from outside of Very Special Kids cannot. 

Written by Pauline Hammond, Family Support Practitioner

No one understands the experience of life-limiting illness better than the very special children we support. Pauline Hammond, one of our family support practitioners, shares a conversation she had with a Very Special Kids child who recounted his own experience with a terminal cancer condition.  

A Piece of Cake 

He was a very brave and sick ten year old, diagnosed with cancer. He had horrible tests, medicines, and treatments for his cancer, but still powered through each day. 

He questioned doctors about what was going on, and he told the nurses off when they hurt him. He made sure people listened to what he had to say, and he let them know when he was not happy. 

His life has been very different since he got sick.  He was far away from family, friends, and normal routines like school. But this determined little boy asked lots of questions and wasn’t satisfied until all his questions were answered.   

He felt safe enough to know what was going on, after all, it was his life and his cancer. He wanted to tell the people around him what he thought was important – and he did! 

One day the doctor asked him “How are you going?” He answered, “It’s been a piece of cake”. The doctor smiled at him because he knew the treatments had not been easy. The doctor said, “A piece of cake?”.  “Yes”, he said. “The chemotherapy was the cake, the surgery was the icing, and the radiation is the cherry on top!”.

This very special child reminds us to always listen and prioritise what children have to say about their own experience. 

Very Special Kids endorses the rights of the child through adoption of the Victorian Child Safe Standards, and we aim to consider the child’s voice in all the services and programs we offer. This little boy reminds us that his right to be heard and to participate in decision making, is fundamental to his support. His frankness was sometimes confronting to his care team. But I have no doubt that this self-assured little boy has more lessons for us all to learn. I know he has taught me a lot.