Monthly Archives: June 2022

A long table is set with photos and mementos of children. There are candles lit in their memory.

Bereaved Parent Weekend – connection and mutual understanding

Grief and loss is an ongoing and complex experience, with no timeline or rule book to follow. Weekends like the Bereaved Parent Weekend, offer a safe and welcoming environment for bereaved parents to share memories of their children, feel joy and express sadness with others who understand and can validate their emotions. 

A group of adults are walking outdoors.Surrounded by nature and located in the secluded Hepburn Springs, the weekend was described by many as an emotional, heart-warming and confronting experience. One parent shared, 

“We were a little apprehensive, unsure of what to expect, worried about possibly breaking down in front of others but we were blown away with how supportive and healing the weekend was. It felt like we were able to spend a weekend with our child, to talk freely about them, our experiences, their memory, our grief, the loneliness and to express our love for our child in a safe and supportive way.

At the close of the weekend, we left feeling like we were able to breathe a little lighter again, like we’d been supported to enable us to let out a little of what we hold so deeply within.” 

A consensus shared by many, apprehension of the weekend, was quickly replaced with mutual understanding and love. Everyone undertook a range of activities which explored or provoked different thoughts, memories or emotions. Parents who attended the weekend shared, 

“With each activity being quite different, each individual was able to take away something different from each session. The different activities began different topics of conversation which bought the group closer together during those discussions as we expressed our deepest vulnerabilities in a safe and nurturing way. It was so well structured.” 

A bowl of grains holds taper candles, lit in memory of children who have died. There is a vase of native flowers in the background.“An invaluable experience to meet other parents who understand your journey, speak your language, and offers a true sacred space of belonging. There are opportunities to go at your own pace, hold genuine conversations with new friends and explore where you are in your own unique grieving process.” 

“The weekend definitely helped us. By listening to others and their experiences, you learn of different coping strategies. After 1 year society says you should move on, but it’s okay to still be grieving your child five years, ten years or forever. There are no right or wrong answers for your grief.”

“You are in a safe place surrounded by a calm and relaxing environment. You are in a group of people who are also on the same journey of dealing with the grief of losing a child. You feel more at ease to discuss your struggles as everyone in the group may be at different stages of grief, but truly understand you.

A lot of people don’t have that support. People often don’t what to speak your child’s name anymore and they avoid the topic, or expect you to move on with life. The group want to know about your child and your journey.” 

When reflecting on advice they would offer to other bereaved parents considering a future Bereaved Parent Weekend, one couple shared,  

“Some bereaved parents may feel the weekend may be confronting or too emotionally draining for them. I would say to them, it may be somewhat confronting, and you may feel emotionally vulnerable, but you will be in a space where you will be looked after and cared for, and with people who have walked a similar journey. At the end of the weekend, you may feel that you were able to smile and laugh while still attending to your sadness and loss. Not many spaces allow us to do that.” 

24 Hours of non-stop excitement

After two years of onsite cancellation, the Very Special Kids 24 Hour Challenge returned in full glory on Friday 3 to Saturday 4 June. Nearly 1,000 participants stepped up to the challenge, raising vital funds for seriously-ill kids in 24-hour care while they keep their NovoFit treadmills in continuous motion for 24 hours.

We are thrilled to announce we have raised over $660,000! Thank you to each and every participant, team captain and donor for their support. Your dedication and fundraising efforts have helped improve the quality of life for children and young people with life-limiting conditions and their families.

We captured some great snaps that you can view and download here.  

Sending a virtual high five to all the below award winners, thank you so much for your incredible efforts!

Highest fundraising individual – Glenn Carmody $22,384
2nd highest fundraising individual – Andrew Fluitsuma $16,789
3rd highest fundraising individual – Belinda Muir $14,326 

Individual (youth)
Highest fundraising individual under 18 years of age – Cara Lukav $5,260 

Highest fundraising team – ALH Group $137,859
2nd highest fundraising team – Ernst & Young $109,499
3rd highest fundraising team – Honan $55,130 

Note: fundraising awards are based on totals as at 9am Saturday 4 June 

Best dressed winner
Mat Hatter & Alice in Wonderland – Jenn Gavito and her son Julius
Special mention also goes to Jessica Birnbaum and her son Elliott, who dressed as the Very Hungry Caterpillar.  

24HC_2022_best dressed

A big thank you to our DIY participants for taking on the 24 Hour Challenge offsite. Shout out to Jimmy Bartel from 3AW for completing 100km and raising almost $30,000 for Very Special Kids – read more here. Also, Very Special Kids Society University of Melbourne for their valiant fundraising effort. 

We would like to take this opportunity to thank all our individuals, teams and corporate supporters for their support and enthusiasm this year! Special mention to ALH Hotels and Ernst and Young for their phenomenal fundraising and ongoing participation in the 24 Hour Challenge. 

Also, a big thank you to our event sponsors, 3AW, Novofit and Precor. The 24 Hour Challenge would not have been possible without the support of many other participating organisations, in kind supporters, MCs and entertainment. Our volunteers also put in invaluable time and effort to bring this amazing event to life. Thank you everyone, for making the 24 Hour Challenge possible. 

Thank you again for ensuring we can continue providing specialist palliative care for children and young people with life-limiting conditions, and their families.  

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.  

Stitched with love

The Bayside Quilters have brought comfort and joy to many of the children and families supported by Very Special Kids. They have stitched together beautiful quilts, creating keepsakes families can cherish in memory of their child.  

One Very Special Kids mum, Kirsty shares how this kind gesture provided comfort and warmth to her and her family.  

“When Lily was born, we received so many beautiful clothes for her in all shapes and sizes. Our relatives also knitted some beautiful cardigans for those special occasions, but the zippy wondersuits were a staple item as we spent most of our first year together lounging around the house.  

When Lily was diagnosed with a terminal illness at seven months of age, our entire world collapsed.  

We created a ‘bucket list’ of activities to do, places to visit and holidays to be had. I also wanted Lily looking her ‘best’ for these events as I knew we would take every photo and video possible, and also knew that we would never get to see her dress up for a school formal, make her debutante ball or walk down the aisle in a stunning wedding dress.  

Lily's quiltAfter Lily’s passing, the offer of the quilt creation by using her clothes was an incredibly thoughtful gesture that we didn’t even know was possible.

We leave the quilt on her bed, sort of like an assurance that she’s kept warm.

Every now and then, Lily’s older sister will wrap herself in the quilt which brings her comfort and allows her to feel closeness. I also at times keep the quilt close to me as a reminder of the colours that made her beautiful eyes pop and the events we spent her last days enjoying with her.”