Family Service Volunteer offers invaluable support

Very Special Kids provides many families with trained family service volunteers, assisting in many different ways, including at the family home and sometimes when the child is admitted to hospital. The relationships formed have proven to be vital to what Very Special Kids does, and as part of National Volunteer Week we wanted to share a special story with you, from a very special two.

Amber, a very special kid, has a rare form of Leukodystrophy, is 6 years old and loves singing and dancing. Yvette, a trained volunteer with Very Special Kids, comes to play with Amber, and offers invaluable support for Amber’s mum Jenny.


Six-year old Amber definitely gets her point across. She uses a special communication book and is at the ‘why’ stage, asking questions like why can’t I walk, or why am I in pain? She’s clever and understands everything that’s going on around her; she just can’t speak. 

 Amber has a rare form of Leukodystrophy. There are less than 100 cases in the world, and she’s the only one in Australia. Thank heavens for social media as it allows me to keep in contact with the other families overseas. 

 Yvette is a trained volunteer with Very Special Kids, and it’s nice for Amber to do things with her. They go for walks, read books and do crafty things. Yvette takes her to dance classes, which means that I can do something else, or I can be there like any other mummy and watch my kid dance. It allows me to be a mum, rather than a carer or a nurse. Sometimes I just want a break. Volunteers like Yvette make a big difference for us.

 Amber’s vision is going, so I’m giving her as many experiences as possible. I go a bit crazy with things like birthdays. We have huge parties and invite all of Amber’s class and most of them will turn up. As her vision gets worse, it will be something special that she can remember.

 Amber loves doing things just like any other kid. She loves singing and dancing. I love how she will give anything a try, so I’ve got no excuse.


 The first day Jenny’s mum had organised a princess theme for us as a way to get to know one another. We started reading princess books but it quickly turned to farts! Amber loves anything to do with the body and body fluids, and she finds farts hilarious. So we then played ‘Gas Off’. Jenny got the game to help Amber with counting, but Amber can’t stop laughing enough to count! So time blew by pretty quickly.

 I love dancing with Amber too. The dance class we go to is really good fun. I used to be a dancer so I think it’s great.

 It’s hard hearing when Amber isn’t well, but I’m also concerned about how Jenny is. Our open conversations are a great way for both of us to work out how much support she needs. We’re very lucky that we’ve got such a great relationship as it really helps to support Amber in the best way possible.

 I’ve always wanted to volunteer. Very Special Kids had a great nine-session training program and I’ve learnt a lot about myself. I’m definitely stronger than I thought I was. Now, facing the prospect of palliative care, in my nursing, or with Amber and Jenny, I have lot more strength, and a lot more knowledge.

 I never thought I’d get as much out of it as I do. I just love it. I recommend volunteering to everyone I can because I’ve found it to be very personal. The reward of building relationships with people like Jenny and Amber has been amazing.

Thanks to Palliative Care Victoria for helping make this story happen, and to all of our wonderful family volunteers for making such an impact on our families lives.