Celebrating 25 years of volunteering

Very Special Kids volunteer, Libby, recently celebrated her 25-year milestone for volunteering with our organisation. In that time, she has supported many of our sibling programs, ensuring the brothers and sisters of the children in our care have fun, feel supported, included and heard.  


Libby delivered a beautiful and moving speech to all our volunteers, offering everyone a chance to imagine and visualise what her first year as a volunteer was like.  

Delivered in the Very Special Kids Function Room in Malvern, this is her speech.  


Please close your eyes and be silent. 

Imagine you are still in this very room, but the clock has been turned back 25 years. 

Imagine you are a child somewhere between 5 and 18 years old.  

It’s night time. The lights are out, it’s dark, you are in a sleeping bag.  

You may have a sick brother or sister. They may have Rhett’s Syndrome or Duchesne Muscular Dystrophy or cancer or a brain tumour, or maybe they can’t talk or walk or make any controlled movements, but no one can tell you why or what it’s called. Maybe your brother or sister has died. 

Imagine this very room filled wall to wall, every available floorspace taken up by a child in a sleeping bag. This is the first ever Very Special Kids Sibling Sleepover and it’s in this very room you now stand, today.  

Now imagine listening to the sounds in this room 25 years ago; there’s rustling of sleeping bags, quiet whispering, gentle snoring and not so gentle snoring and… farting. 

Now as that child reflect upon your day. You’ve played some name games and ice breaker games to get to know the other kids, you’ve burnt off some nervous energy with some physical games, you’ve done some yummy cooking, some art and craft, you’ve had a chance to talk about your sibling with your peers, you’ve eaten pizza, had a night walk down the street for ice cream, you’ve played dress up and played a roll in a sketch night and put on a funny play. Then you tucked up in your sleeping bag and watched a movie.  

Tomorrow when your parents come to pick you up you are going to put on a concert for them and the finale is a group song about love and then you’ll walk up and give them the heart you made in craft and they’ll see you… really see you and give you a hug. 

Now as you lay there in your sleeping bag you realise for the first time in your life you find yourself in a room full of kids that have lives similar to yours. No one at school does. Mum and dad are so busy with your sick sibling. Or so sad with their own grief. You often feel alone, forgotten. Today may have been your first taste of your own time. Maybe this room you are laying in is the first place you have experienced that.   

Now slowly open your eyes and look closely at me.  

I am now going to tell you one significant fact. 


So why am I still in this room 25 years later? And without my sleeping bag? 

Because I found what fills my bucket. We all volunteer in different roles, it may be fundraising, it may be events, it may be the hospice or the hospitals, it may be the family home, or sibling days or sleepovers or camps or administration. I volunteer in a number of different areas at Very Special Kids but the one that most fills my bucket is the adolescent sibling program.  

It’s off site, we take the kids away on camp over the weekend, so it sometimes feels like it’s a bit forgotten, but let me tell you it’s not forgotten by our kids. It sends them forward into their adult life with some amazing skills that they may not get anywhere else. 

These kids’ sadness, tears, laughter, honesty, resilience and special brand of kindness energises me, year after year. Their stories touch me and have re-energised me for 25 years and that’s why I keep coming back to this room.