Monthly Archives: May 2022

Autumn Classic 2022 – that’s a wrap!

On Friday, we held our fifth Autumn Classic to great success!

We are thrilled to have raised over $185,000 – and climbing. Thanks to our generous community, we can continue to improve the quality of life for children and young people with life-limiting conditions and their families well into the future.

Watch the video below to relive the action!

After seven hard fought races, congratulations to InForm TMX MAKE, who took out the win and the much sought after perpetual cup, with riders Zac Robinson, Ronen Jachimowicz, David Vorcheimer, Hamish Rotstein, Brett Robinson and Pat Lane.

Autumn Classic 2022_InForm teamSecond and third place went to Grupetto and Trivelo, with all teams putting in a sensational effort.

The Team Spirit award – for the team/group who really get behind what the Autumn Classic is all about – was awarded to Pedalada, who put in an huge effort to raise five times as much as they did last year!


Congratulations also to the highest fundraising team, Toros, who have raised almost $59,000 across their two teams – an incredible result!

Recognition awards were also awarded to:
Lee Matenga – Chadstone Toyota team captain, and loyal committee member. Lee went above and beyond this year – recruiting new teams, sourcing fabulous auction items, and consistently promoting what the Autumn Classic is all about.
Zac Robinson – for inspiring everyone at just 13-years-old, with an admirable attitude and equally impressive ride! Zac’s winning moment can be seen here.

Autumn Classic_2022_collage

The Autumn Classic wouldn’t be the success that it is without the support and generosity of so many people and organisations! We extend our heartfelt thanks to:

  • Paul and his team from The Cycling Fix for getting everyone on their bikes
  • Harry the Hirer for building us a beautiful marquee
  • Craig from Zwift for providing seamless software
  • Novofit for providing warm up Watt bikes to get everyone race-ready
  • Pete Montgomery for calling, and heckling, the racing
  • Our wonderful Very Special Kids staff and volunteers

Thank you to our many generous in-kind donors including Domain, Bridged Group, Coca Cola Amatil, PFD Foods, Kind, Ezycharge, Wallop Water, Flexed and many others. Additional thanks to auction item donors including Golf Clearance Outlet, Bright Velo, Giant South Yarra, Aperitivo and many personal supporters.

Thank you to everyone involved, we look forward to welcoming you back to Very Special Kids next year!

A mum and dad are holding their baby who has a small tube from his nose to help him breathe. They are smiling at the camera.

Lucas’ story

A happy boy Lucas and his parents Mel and Felix

Written by Mel and Felix, mum and dad to Lucas

When thinking of Very Special Kids, the word related with it is “experience”. There are several charities who helped us during this hard journey, but Very Special Kids is the only charity that gave us a lot of memories of Lucas. Belinda and Helena came to our house to provide music therapy almost every week, which is one of Lucas’ favourite times. He smiled a lot when we sang and danced with him.  Everyone in the family treated music therapy as a family event and looked forward to it. Now every time when we think of Lucas, we will think of his happy face while he was dancing with the music, which gave us much comfort.  

 Also, Very Special Kids provided very professional medical support to us as well. I still remember the first time I saw Belinda and Paula. They answered quite a few questions from us when they visited us at home. And after that, Belinda sent me a very detailed email on how to do physio exercises with Lucas and links of the toys he may be able to play with in his condition. We are very grateful for that as we finally knew how to play with Lucas and what was good for him instead of treating him as a sick child and having no idea what we can do to help him.  

The other time that makes me grateful happened after Lucas experienced two episodes and came back from hospital. We did not dare to cuddle him as repositioning him may cause blockage of his airways. Belinda helped us and with her supervision, we finally cuddled Lucas again! We could see Lucas’ smile when we cuddled him, and he finally did not need to wonder why dad and mum did not cuddle him. I feel so lucky to meet Belinda and Very Special Kids. I will definitely regret if I did not cuddle Lucas during the last period of his life. 

As a parent who experienced the death of a child, I feel that there are two periods I needed more support. The first one is the first time I knew the disease of Lucas and the second one is after he passed way. During these periods, we have a lot to decide and accept. Sometimes, accepting the facts is very hard. Parents may have a lot to regret and think of “what if”. A professional counsellor is very important at this stage and Jodie is one. But before she can do anything to help, being honest to yourself and trusting her is more important. When we tell her what we did and what we were feeling really upset about, she was able to help us. Believe me, as a professional counsellor, Jodie heard of more shameful or dark thoughts, so I know she will never judge us.  

If I have to give a suggestion to Very Special Kids, I will say, as a parent who knew my child had a limited life span, I wanted to spend every minute with my baby. So at this stage, all visits that can involve both the parents and kid in will be more welcomed.   

Compared with others, I may be one who recovered quickly. When I look back, there are three reasons that helped me all the time. First, my husband and I are very honest and straightforward to each other. We shared every thought and never blamed each other. The tragedy is sad enough, so as the two who love Lucas most, we decided to be have the support of each other. Second, I trust the professional counsellors. There are many professionals who are willing to help at this stage, so I shared anything with them no matter whether it was good or bad. I shared my sadness, my guilt, or even my fear to my marriage with them. And it was very helpful. Third and most importantly, I know Lucas loved us as we love him. He must want us to be happy and enjoy the rest of our life. Please don’t feel guilty of living a happy life. I will never forget Lucas but I will enjoy my life as well because Lucas taught me how precious the life is.  

And finally, I will suggest every parent with a special kid create as much memories as possible, videoing your child and trying to read to them. Those memories will save you in the future. No matter how hard it is right now, time will flush the sadness and what is left are those memories. Now every time when I think of Lucas, I am sure that he lived a happy life with love. That is enough.

A group of adults are sitting and standing indoors. Some are holding their trophy and certificate. They are smiling at the camera.

Thank you to our very special volunteers

Last night we had the chance to say thank you to many of our hardworking and dedicated volunteers at our Volunteer Appreciation Night.  

Congratulations to all who received recognition awards, each of you have gone above and beyond and we are so grateful for the support you give to the children and families in our care. Special mention to Steven, who celebrated his 30-year milestone and is one of our longest serving volunteers. 

Steven shares, “30 years…It does not seem like 30 years, I still feel I’ve got a lot to give, and I know by giving, then that warms my heart as well. When you go and give yourself to volunteering, you make such an impact in someone’s life, and in turn, that makes such an impact on you.” 

We say it time and time again, but Very Special Kids simply would not be possible without the tremendous support of our Very Special volunteers. They are the pillars of our organisation and without their support and generous contribution of time and care, we could not continue to provide the best quality of life to children with life-limiting conditions and their families.  

On behalf of everyone at Very Special Kids, thank you! 

Congratulations to the following service award recipients:

30-year Service Award Steve is standing inside at Very Special Kids, holding his trophy and certificate. He is smiling for the camera.

  • Steven Rosewarne 

25-year Service Award 

  • Libby Clarke 
  • Shirley Graham 

20-year Service Award 

  • Jennifer Keat 
  • Brad Crewe 
  • Julie Cascone 
  • Sandra Lewis 

15-year Service Award 

  • Kate Wright Libby is standing indoors at Very Special Kids, holding her award and certificate. She is smiling at the camera.
  • Bruce Emerson 
  • Roslyn Ferres 
  • Caroline Morgan 
  • Andrea Johnson 
  • Ray Sneddon 
  • Kay Sutherland 
  • Judy Curnow 
  • Katy De Valle 
  • Genevieve Le Hunt 
  • Jessica Marshman 
  • Caroline Savage 
  • Jan Silk 
  • Linda Miller 

10-year Service Award 

  • Margaret Burston
  • Tia Sparis
  • Stephanie GroubeShirley is standing indoors at Very Special Kids, holding her award and certificate. She is smiling at the camera.
  • Diana Todhunter
  • Michele Layet
  • Peter Polson
  • Anisa Khosh
  • Sue McClean
  • Holly Rominov

5-year Service Award 

  • Melissa Kelly
  • Naree Osmers
  • Susie Gibb
  • James Tavlian
  • Ben Mabon
  • Anne O’Connor
  • Luke Rycken
  • Barbara Hutchinson
  • Cecilia Pynaker
  • Dianne Ryan
  • Natalie Ward
  • Hamish Rotstein A group of adults are standing together holding their award and certificate, smiling at the camera
  • Anita Fothergill
  • Matthew Coleman
  • Anna Dawson
  • Laura Purcell
  • John Dawson
  • Catherine Sawyer
  • Fiona Gardiner
  • Megan Wimmers
  • Bridget Walker
  • Sandra Alway
  • Tanya Azar
  • Chloe Balfe
  • Cecilia Kwok
  • Claire Rasmussen
  • Claudine Tsao
  • Varsha Desai Four women are standing in a group, holding their awards and certificates, smiling at the camera.
  • Di Judd-Campbell
  • Alison Jane
  • Caitlin Smith
  • Lachlan Cauchi
  • Carmen Blatti
  • Angela Chen
  • Anastasia Lewis
  • Denise Joy Kallenberger
  • Mandy Lobley
  • Sachi Mylius
  • Edward Kidd
  • Callum McNicol
  • Lois Smith
  • Luigina Panayi
  • Tina Theofanis
  • Melissa Savaglio A group of adults are standing and kneeling, holding their certificates. They are smiling at the camera.
  • Ally Liew
  • Joan Bruton
  • Cody Oliveira
  • Lia Wassell
  • Rainer Kallenberger
  • Andrea Ryan
  • Ann-Marie Trinh
  • Catherine Altson
  • Elizabeth Zimet
  • Latha Devaraja
  • Megan Mcgregor
  • Mingmei Li
  • Nella Campagna
  • Nikki Phillips
  • Paari Palaniswami
  • Trent Toohey
  • Vanessa Rubenstein



A group of young adults are outdoors in the bush. They are laughing and smiling at the camera.

A volunteer’s reflection on the adolescent sibling program

Written by Very Special Kids volunteer, Laura 

I became a volunteer with Very Special Kids as a way of becoming more involved in a community that was doing some good in the world.  

I began my volunteering journey in the hospice and soon became involved with the adolescent program by attending the annual adolescent camp – a weekend long adventure camp, full of fun activities for the young people we support. This first experience opened my eyes to the space that was created and held for adolescents and the potential for conversation, debriefing, sharing and growth; all wrapped in an array of fun activities.  

I decided to become involved in the adolescent program because I instantly saw the value of bringing young people together and facilitating the space for them to share their stories with peers in similar situations. I’ve seen the shared understanding young people who have a sibling linked in with Very Special Kids have, and the mutual respect they all hold for each other. The adolescent program is my favourite aspect of being a Very Special Kids volunteer. I’ve been lucky enough to watch a lot of the young people we support grow over the years and I’ve seen first-hand how our shared experiences nurture compassion, mutual respect and the development of good people. 

This year, I was lucky enough to join the Mittagundi camp – a week long adventure farm stay where we went back to basics; no electricity and no technology. Just us chatting, cooking, chopping wood, cultivating vegetables and living from the land. It was a week of firsts for a lot of us; first time setting up a tent, first time hiking, first abseil, first time in a wet suit, and first time away from home for more than a few days.  

Young adults are collecting water from a river, and hiking outdoors.

Everyone rose to the challenge and met each activity with enthusiasm. Mittagundi gave us all a chance to slow down from our busy lives and enjoy the magic moments each day held. By the end of the week the challenges faced forged new friendships, sparked important conversations and fostered endless fun.  

My involvement in these programs has solidified, in my mind, the benefits of being a volunteer with Very Special Kids. The opportunities afforded to me, have allowed me to grow in the volunteer role and develop my own sense of self and belonging. I’m in constant awe of the young people we support and how they carry themselves with respect, compassion and empathy. The most enjoyable part of these programs is connecting everyone together and watching their friendships form.  

These programs, for me, serve as a reminder for what’s really important in life – making positive connections with each other and sprinkling in some fun. The adolescent program has highlighted time and time again exactly how important it is for young people to connect and grow over mutual understanding of having a sibling linked with Very Special Kids. I’m so incredibly lucky to be involved in the program. 

A group of young people are standing outside smiling at the camera. There is a dog in the front, and one person is holding a chicken.

Two Perspectives on the Volunteer Sibling Program

When a child has a life-limiting condition, we often forget about the stress this can place on the whole family, specifically siblings.  

One volunteer and one parent share their insights on the Sibling Support Program, and what they have learnt in the process. Bernadette didn’t know what to expect when she decided to enlist the help of Very Special Kids volunteer, Susie in 2019. Here are their stories and reflection on the program. 

A parent’s perspective 

Written by Bernadette 

When Very Special Kids first suggested a friend for my second daughter, I was hesitant at first because I thought to myself, my terminally-ill child is the one that needs help and support. But I just didn’t realise how challenging it was for my children to see their older sister getting so much ‘attention’ from doctors, therapists, and volunteers.  

 I realised after Susie joined our life that my second child was yearning to be treated equally to her big sister, and Susie was the person that made her feel so very special. Jessie looks forward to Susie coming every week. Even though Susie is a neurophysio she is very focused with her attention when she visits to be on Jessie.  

Jessie is beaming after every visit. I really could not have been more grateful to see my middle child (who is often forgotten amongst the medical appointments and emergencies) sparkle after getting such special one-on-one attention from someone who comes just to visit her. Thank you so much for introducing Susie to our family. 

Being a volunteer 

Written by fellow volunteer Louise who interviewed Susie 

“Someone just there for her.” Mum’s statement ended the doubts Susie had and most family volunteers have about whether they are doing enough. Were the visits fun for the sibling?  Answer yes. It made the sibling feel special and important. Her sister had many appointments, her sibling had Susie – coming just to see her.  

As a family volunteer, Susie had expected to utilise her background as a physio. Wrong. The critical skills turned out to be listening, chatting, navigating the slippery slide and swings at the local park, and reading her young friend’s choice of book. The story of the wolf who had a duck and rabbit in its stomach who liked to dance and partake in candlelight dinners was on repeat loan from the library. 

The greatest challenge and most nerve-wracking moment came with the discovery on the way home from the park one day that Dolly had lost her green shorts. As all parents and carers know, this is a crisis. A happy ending seemed unlikely. There was quite a bit of real estate to be forensically examined. Reassurances from Susie that it would all be okay didn’t change the distress on the young face looking back at her. Susie tried a different tack. “No one would steal Dolly’s green shorts” This turned out to be prophetic. The pants were found, crisis averted. 

Susie adds, “The most rewarding aspect of volunteering with Bernadette’s family is the laughter we all enjoy when we are playing, chasing statues and being silly when we all read stories together piled on the couch. I leave with a smile on my face and from what Bernadette tells me, Jessie is smiling too!” 

COVID-19 stopped the visits until life moved to Zoom. Who knew you could have so much fun playing hide and seek on Zoom. The gap in visits hadn’t dulled the ready laughter or love of a chat. 

A woman is outside with her arm around a dog, they are both smiling at the camera.

International Nurses Day – Meet Inma

This International Nurses Day, we speak with Inma, our newly appointed Infection Prevention Control Nurse.

Inma joined Very Special Kids late last year as a Registered Nurse and comes with a wealth of knowledge from her community adult palliative care background. We spoke to Inma about what nursing means to her and the excitement of her new position, as we recommence our services at Monash Children’s Hospital and prepare for the reopening of our hospice in early 2023.

What do you appreciate most about being a nurse?

I was lucky to choose nursing as my career over 20 years ago. It’s given me so many opportunities to work in different countries and different areas of nursing.  It is such a privilege to look after people and support them. Before I started at Very Special Kids, I specialised in community adult palliative care for the last seven years – and found it very rewarding. I believe everyone deserves the best quality of life and the best death that they could have. That’s very important for me.

What inspired you to transition to children’s palliative care?

I was very fortunate to attend the Oceanic Palliative Care Conference in October last year and was impressed that Very Special Kids had two presentations. Listening to the presentations about what Very Special Kids does really impacted me. I had no idea that it was possible for one organisation to support children and their families in so many ways. I loved how personalised the level of care was. I believe it’s important to die where you want to die and for families to have that option with Very Special Kids. That’s significant.

Can you share an overview of your new role at Very Special Kids and how you support the hospice team?

To ensure the safety of the children and families in our care, Very Special Kids follow the best practice of Infection Control. As Infection Prevention and Control Nurse, I ensure staff, volunteers, and anyone visiting Very Special Kids hospice are complying with safety procedures and policies. I believe it is everyone’s responsibility to stay safe and protect the children we care for. It is important to remain vigilant and proactive to ensure we are maintaining a safe and secure environment for the children and young people in our care.

What is the Very Special Kids interim space at Monash Children’s Hospital like?

The space has been transformed quite a bit. There is a big sign on top of the door that takes you into a little ward that says, “We are so happy you are here”, and that is such a beautiful, welcoming message to parents and children that we are thrilled to be together again. There are animals and flowers and it’s so beautifully decorated by the staff. It’s a really lovely place.

When I see the smiles on the children’s faces and love in the room, it makes me so happy – the kids enjoy all the facilities available at the hospital. One of the favourites, is the little cinema where the children can enjoy the full movie experience – even if they haven’t gone to a cinema before. There are also different gardens to explore, we often take the kids in their wheelchairs to the gardens to enjoy the sunshine. Jaffa, the Very Special Kids therapy dog will sometimes come along for a walk with the kids, and it really is special. While it might not be our hospice, it has become a great interim space to support children and families.

What would you say to a family considering a stay in our interim hospice?

Each family has their own routine, and it can be a big step for them to have someone else look after their daughter or son. Very Special Kids try to really follow what the parents do at home. Same times, same routines. If it’s an afternoon bath, that’s what we are going to do to make the transition as easy for the kids as possible. It is important to me and the service delivery team that we can personally understand each child in our care. That way we can adapt to best suit their needs, so if loud noises don’t agree with them, we are going to have soft music or if they are sensitive to light, we adjust it to best fit their needs. Every little piece of information is taken very seriously.

What is one of your most memorable experiences?

I have already had so many incredible and unique experiences. Before our space at Monash Children’s Hospital reopened, the music therapist, Helena, and I visited a family whose baby required 24/7 support. During our time together, the parents learnt techniques for holding their baby, allowing them to sing and have a beautiful moment with their child, while still ensuring they can breathe properly. It was so beautiful to witness an incredible moment between the parents and their baby, watching them create lasting memories where they could just enjoy having fun together.

What are you most excited about with the new hospice facility reopening in 2023?

I’m excited about having a sensory room that is purpose built and the whole design is very modern and bright. The hydrotherapy pool is also going to be an amazing experience for the kids, a lot of the children we support tend to be quite stiff, so experiencing the hydrotherapy pool will really help make physiotherapy easier for them, assisting with better pain management.  A lot of thought has been put into the design of the hospice, and I think it’s going to come together nicely and functional for what  children and families need.

What is your favourite thing about working at Very Special Kids?

I love that nothing is impossible, and nothing is too difficult. If there is an alternative option that best fits the child’s needs, Very Special Kids will do its best to adapt and tailor their support. You see that consistently across the board with every department, whether it is the service delivery team, volunteers or fundraising, I feel there’s a common spirit and philosophy of making it happen. I truly believe that is what has kept Very Special Kids going for so many years.  It’s quite unique.

Do you have any advice for families thinking about using Very Special Kids services?

I would encourage families to trust, join in and give Very Special Kids a go. The staff understand that parents need a break and provide 24/7 clinical care to give peace of mind and ensure the safety of your child. When the kids are with us, we want everyone to have fun. It’s not about babysitting them. It’s about making it count and making every moment special. It is always my goal to get a smile out of every child who stays, so they’re going to get bubbles, music, dancing, being a bit silly, whatever it takes to get a smile and to get the kids to have a good time. It’s really rewarding.

An adult and young girl are sitting outdoors on a patio, with the sun shining on their faces. The background is of blue skies and trees.

Staying at Glen Osmond Farm

More and more families have been able to create lasting family memories at our holiday accommodation in Glen Osmond Farm. Claire and her family recently stayed over the Easter weekend, recharging their batteries as they enjoyed a relaxing escape in the countryside.

Claire shares:
“Thank you, Very Special Kids so much for the opportunity for us stay at Glen Osmond Farm on the weekend.  

We had a wonderful time.  It was so relaxing and peaceful. Our girls were so happy, they loved spending time with mum, dad and grandma enjoying the fresh country air. We had support worker assistance some of the time, which was great. This was the first time our youngest daughter Olivia, almost 3-years-old had been on holiday apart from staying at relatives’ homes. The setup is fantastic for families with children with additional needs. We were amazed by how many kangaroos there were, we got to feed the sheep, saw a fox, a rabbit and lots of birds. We also had a lovely chat to the other Very Special Kids’ family who was staying in the cottage next door. 

Three images of a family's visit to Glen Osmond Farm, sitting outdoors, indoors and standing with sheep in the background.

We were very lucky with the weather that was sunny on Friday, Saturday, and Sunday. We got to see the spectacular sunrises each morning. On Saturday we went to the children’s playground in Woodend and to one of the local cafés. On Sunday we went to Hanging Rock. We were a little bit limited with what walks we could do as we only brought one pram that had wheels suitable for an unsealed path, though it was pretty to look around and go to the cafe for scones with jam and cream. We saw the outdoor art and sculpture exhibition at Hanging Rock Winery nearby which was on as part of the Autumn festival. On Monday it was raining and foggy though it was still beautiful to see the mist over Hanging Rock and over the trees.

 We highly recommend Glen Osmond Farm to any Very Special Kids families who would like a scenery change in the country!”