Monthly Archives: May 2020

Meet our essential workers

For over 14 years I have provided emotional support, counselling and advocacy to families or individuals in a family whose child has a life-threatening condition or has died from one. I also train, support and supervise family volunteers and facilitate a range of group therapeutic programs for children, parents and families at Very Special Kids.

But right now during COVID-19 I have been supporting families with online counselling sessions and being with those that are at end-of-life in the Very Special Kids Hospice. The exceptional care these families have experienced and the opportunity to have the hospice and staff entirely to themselves has been unique. I believe it’s provided families with a haven at a time when the world seems to be a  little unsafe.

End-of-life care at Very Special Kids means hopefully that families can be together in a supportive environment where they can focus on spending time with their child without the worry of managing the
medical aspects of their child’s care. It allows for families to create special memories in an environment of love and support. I think COVID-19 is adding to the sense of isolation many of the families we work with already feel as a result of having an unwell child. For families with a vulnerable child they have been forced to make choices especially around care and support in order to protect their children, but this comes at the cost of bearing the care burden alone. They, like many, are also juggling having siblings at home and educating them whilst caring for an unwell child. I think for many bereaved families it has heightened their grief, whilst many have also acknowledged that nothing can be worse than when their child died.

I have learnt that ‘normal’ death and dying does not stop because the world is partly shutdown due to a pandemic. Death and dying during a time like this can add additional stresses to the families we work with who are sadly going through the death of their child. The additional pressures surrounding planning a funeral or memorial are a big challenge with restricted numbers and locations. For some the thought of a small funeral may be appealing but for others it can be devastating not being able to give your child the farewell you wish to. The option of delaying a memorial until the restrictions are lifted is a possibility but a funeral can also be a stepping stone to the next part of the grief journey and the absence of this may impact how families cope during this time.

I think supporting families at the end of their child’s life is such a privilege. I know I cannot prevent the inevitable pain that a child and family experience from the diagnosis and subsequent journey and death of their child. I only hope that the support Very Special Kids helps the pain to be more manageable in some meaningful way.

Please donate to ensure we can continue to provide this essential care to families.

24 Day Challenge – it’s a wrap!

We are thrilled to announce the 24 Day Challenge has raised $349,616! Thank you to each and every participant, team captain and donor for their support.

The 24 Day Challenge replaced the annual 24 Hour Treadmill Challenge this year, due to COVID-19 restrictions. We were delighted to have many return teams join the new version, and also a number of new participants get on board to support the event.

The new format encouraged participants to get active for 30 minutes every day, for 24 days, from Friday 1 May. Participants have been running, riding, playing footy, doing online yoga – the creativity has been fantastic and a great opportunity to keep moving during some challenging times.

We are excited to congratulate the below award winners for their amazing efforts.

Highest fundraising individual – Stuart Giles $30,052.95
2nd highest fundraising individual – Glenn Carmody $13,862.00
3rd highest fundraising individual – Peter Iancov $11,591.55

Individual (youth)
Highest fundraising individual under 18 years of age – Cara Lukav $4,104.75

Team (not receiving corporate funds)
Highest fundraising team – Hey, Hey It’s VSK $28,440.55
2nd highest fundraising team – Advent Partners $24,852.75
3rd highest fundraising team – Slater & Gordon (medical law team) $9,768.53

Corporate Sponsored Team
Highest fundraising corporate sponsored team – Icon Group $57,068.80
2nd highest fundraising corporate sponsored team – Jemena & Zinfra $46,504.68
3rd highest fundraising corporate sponsored team – Ernst & Young $45,873.46

Note: fundraising awards are based on totals as at 12am Monday 25 May

Best dressed – Andrew Wells, for completing his activity dressed as anything from Batman to a banana, to Ariel from The Little Mermaid. Thanks for keeping us entertained!
Most creative – Pip Reid, for taking us on a virtual world tour, visiting different countries every day over the 24 days. Incredible effort Pip!
Physical challenge – Adam Watson and Jules Tai, for setting a goal of running 140km each, then blowing it out of the water by running 260km and 254km respectively. A well deserved rest is in order for both of you!

National Volunteer Week

Today marks the start of National Volunteer Week, celebrating the generous contribution of the volunteering community around Australia. At Very Special Kids, we are immensely proud of the commitment and generosity we see everyday from our incredible volunteers.

This year’s National Volunteer Week theme is “Changing communities. Changing Lives”. The contribution every single volunteer makes to Very Special Kids does just that – supports the families and children we care for. Thank you to all our volunteers for your care, compassion, energy and kindness. It is truly appreciated.

190802_GBlue_Z6_0255_Lge CAZ_4677f  Tara & Hallie YarrawongaV2

Congratulations to the following volunteers receiving milestone service awards this year. Thank you for your ongoing support, your commitment is a true inspiration.

5 years

Laura Anthony
Caitlin Barker
Clare Bellhouse
Allira Boadle
Milly Braim
Maureen Cawley
Natasha Clarke
Carolyn Cook
Nilusha De Alwis
Julie De Vercelli
Peter De Vercelli
Phil Endersbee
Madeleine Gardam


Siobhan Hogan
Marian Jackson
Vic Jackson
Rhys Jewell
Georgina Johnstone
Anaita Kanga-Parabia
Carmel Kennedy
Nicola Kontaxis
Kirstie Le Quesne
Julie Martyn
Amy McKimm
Jemma Munoz-Richards
Ange Neilson


Van Nguyen
Emma Nicholson
Lucy Nicholson
Claire O’Grady
Anna Padula
Tiffany Phillips
Claire Rankin
Lisa Sander
Ashley Sibbing
Kerrod Smith
David Szeleczky
Sarah Valdez
Uyen Vu

10 years

Jill Miles
Julia Payne
Sorrell Robinson


Deryn Sayers
Vincent Sharp
Christine Smith


Julie Stapleton
Sigal Witkin
Alastair Wright

15 years

Gayle Goldsmith
Sharon King
Andrew Perry
Sally Torney

20 years

Karen Chisholm
Gemma Georgiou
Sue Hardiman
Monica Kenny
Souzy Makrakis

25 years

Dawn McKenzie


Meet our nurses: Gillian Newham

How long have you been at Very Special Kids?

I’ve been working at Very Special Kids for a little over five years, I started in December 2014.

What is your background and what were you doing before Very Special Kids?

I commenced my nursing training over 30 years ago, and since graduation, I have practiced in various fields of nursing. I have worked as a psychiatric nurse, in plastic surgery and orthopaedic surgery. I had a short break from my career until both of my children had started school, and then just prior to joining Very Special Kids, I was working in adult palliative care, neurology and as a district nurse.

What’s unique about your role?

Paediatric palliative care is a specialised field in itself. Not everybody has the will or desire to work in palliative care, let alone paediatric palliative care.

What attracted you to working at Very Special Kids?

When I first started working in adult palliative care 13 years ago, I realised how much I loved it. I found that I was passionate about my work in this field, something I never thought I’d consider when I started my nursing career. I have always found it a privilege and honour to nurse someone at the end of their life, and to be given the opportunity to extend compassion in support of a grieving family. I love that I have the opportunity to provide quality holistic care, where the focus of care is not just on the symptoms of a disease alone.

I had heard about Very Special Kids and was interested in seeking opportunities to extend my knowledge and experience. At a time when my workplace was restructuring, I decided it was a great opportunity to make the transition into paediatric palliative care.

What do you love about your role?

Apart from the holistic aspect of palliative care, I love the fact that what we do makes the difference between a child experiencing a potentially traumatic and painful death, and a dignified and peaceful death. There really isn’t anything more rewarding than knowing you had a part to play in that. Being able to navigate families through the process is not always easy, but the gratitude they show us for what we do – I’d do it all for free. It truly means far more to me than any amount of money I could be paid.

What’s something others might not know about your role?

I have found that there are many misconceptions in the general community about Very Special Kids and paediatric palliative care. I often hear “I couldn’t do what you do”. I usually explain to these people that what we do significantly impacts how these children live the end of their lives, and the care we provide will support them through the process of dying with the aim to have them ‘die well’. It’s all about how you frame it for others. I find that this explanation leads to a clearer understanding and appreciation in regards to the source of my job satisfaction, and my ability to work in an often challenging work environment.

What is it that gets you out of bed every morning to come to work?

I love the kids; they brighten everyone’s day. I look at what they and their families deal with in their lives daily, and realise I’ve got nothing to complain about. I love being with the kids and I love working with our team. We’ve got a great team and I consider them my friends. Above all else, I love nursing. It’s all I’ve ever done and I’m sure it was all I was ever meant to do. It’s in my DNA.

What is a hospice achievement that has been special to you?

When I received the ‘Quiet Achiever Award’, as part of our Very Special Employee Awards, I felt valued, recognised and appreciated for my contribution to the team. When you work as a part of such a small and close team, to be rewarded in this way is meaningful and special.

What’s your top tip to those who are having a tough time or day?

I believe it’s important to open up and share what you’re struggling with, rather than carrying the burden on your own. I find just talking with others, whether that be family or work colleagues, is so valuable. Practicing self-care and self-love is also critical.

Tell us a bit about yourself.

I was born in Brisbane, Queensland, in 1971 and I have one younger sister. Our family relocated, with my father’s work as a social worker, to Toowoomba when I was 14 years old. It was here that I completed the remaining years of secondary school and then my general nursing training. I was accepted into the second last intake of hospital trained student nurses at Toowoomba General Hospital in 1989, before university training commenced the following year. I loved my training, as we learned through constant clinical ‘hands on’ exposure for three years, gained invaluable knowledge and experience, developed a broad range of clinical skills and grew up very quickly. I graduated as a registered nurse in 1992. The following year, I commenced an 18 month psychiatric nursing course at Baillie Henderson Psychiatric Hospital, Toowoomba. At the completion of this course, I travelled overseas with a colleague and met my husband. He resided in Melbourne and so I relocated here in 1995. We married in 1996 and had two children, a son who will be 23 this year and a daughter who recently turned 20. Our dog is a beautiful 12 year old cavoodle with cardiac issues and enough medications to fill a dosette box!

In my spare time, I enjoy being creative. I’m currently undertaking a three-year part time Diploma in Jewellery and Object Design through Melbourne Polytechnic. Developing the skills required to be a jeweller is far more difficult than I expected, however does satisfy my need to be a perfectionist.

If you weren’t a nurse, what would you be doing instead?

I can’t really imagine doing anything else. As a child, I always had plans to be a pre-school teacher, however this all changed for me in year 12. I had visited family in hospital frequently that year, and became intrigued and inspired by the nurses. So nursing it was and still is. No regrets.

The Importance of Play

The importance of play is well documented in early childhood literature. This importance is attached to the functions of play in assisting children to:

  • express thoughts and ideas
  • demonstrate emotions and understand feelings
  • develop thinking and reasoning
  • build relationships
  • understand and make sense of the world.

Play offers opportunity to learn, grow and develop across all domains including social, cognitive, physical and spiritual. Play is a fundamental tool for children and access to play has been acknowledged as an important human right through the United Nations Convention on the Rights of the Child.

At the corner stone of play is the opportunity to develop, maintain and sustain meaningful relationships. In the wake of recent events this has never been more important. As we find ourselves locked down in our homes, isolated from community and networks we are reliant on finding ways in which to nurture our own wellbeing at the same time as our children.

In times of crisis and uncertainty play becomes a critically important tool for children and adults in order to construct and reconstruct their understand of what is happening, why it is happening and what does it all mean? Play has never been more important as we find ourselves forced into lockdown, physically distancing and managing new uncertainties of how long will this go on for and how long can I do this for? Play is a meaningful device for both children and adults.

The very nature of play invites a multitude of languages from which participants can pick and choose according to their likes, dislikes and strengths. Languages of play include speaking, moving, showing, looking, pointing, singing, painting, sculpting, making, constructing and many more. Play experiences to support these languages include:

  • splashing water, making waves, e.g. bath time, water tubs, doing the dishes
  • drawing, painting, making, cooking
  • constructing, building e.g. LEGO, blocks, sticks, puzzles, cubby houses
  • talking, telling, saying, singing e.g. stories, dressing up, puppets, plays, music
  • problem solving e.g. board games, hide and seek, puzzles
  • moving e.g. dancing, exercise and sports

For children where all or some of these languages are not accessible then enjoyment and understanding can come from watching others play and responding through smiling, speaking, seeing, watching, hearing and knowing. Play experiences are a means to provide active care to children and ourselves, they can provide relief from discomfort and immediate and lasting connections to support health, wellbeing and development.

Engaging in play with children and co-constructing new meaning relives the burden from the adult to ‘fix’ or ‘make better’ situations that are beyond their control. Play experiences offer the opportunity to engage in true acceptance of the current situation and sit in the uncomfortability of not knowing. Of being truly present in the company of another and through this process making memories together; developing ideas, thoughts and new understandings. Play offers unlimited access to different ways of doing and in these uncertain times can bring some comfort through releasing the need to go back to ‘normal’. Watching a child in the experience of play is mesmerising and enchanting. There is so much to be learned and so much to be gained from playing more, expressing more and fixing less.

Consider for a moment what does play look like for you and your family? How can you play more today?




Meet our Allied Health Team: Shari Manley

What is a child life therapist?

Child Life Therapists (CLT) work in healthcare settings supporting children and their families through their specific and individual journeys. The work of the CLT is primarily to support the child to have their rights, desires and needs met and where possible enable the child to find their voice in the healthcare environment. CLT work within the allied health team supporting families, professionals and the wider community to understand children’s capabilities and to create environments where children are listened to and respected. The professional boundaries of CLT extend beyond individual experiences with children, the work is designed to impact the environment and the people in it to ensure that children have the opportunity to express their wishes, be actively involved in decision making and find joy through play and recreational experiences.

What does it mean for you to be a child life therapist?

CLT offers broad and varied professional experiences that enable me to explore the many aspects of work that I enjoy including teaching, creative thinking, problem solving, team work, nurturing children and engaging with people of all ages.

I first found CLT at the Royal Children’s Hospital in 2000, I was initially challenged and intimidated by the fast paced, medically driven environment but soon realised that I thrived on the action of paediatric healthcare,  in particular the opportunity to learn new things every day and work with a wide range of disciplines including nursing, medicine and allied health. I also love the families, meeting new people, providing assistance as it is required and spending each day making a difference to their experience of hospital. I came to understand that there is no other job like CLT and that it allowed me to explore and enhance many aspects of my character including my interest in advocating for children, educating others, creating new programs, listening to children, responding to their wishes and supporting children to navigate their healthcare journeys with confidence and success.

I am thrilled to be at Very Special Kids and the opportunity this provides to create a CLT program specific to the hospice environment, bringing all my previous professional experience with me and working with others to design a service that meets the needs of children and families who stay at Very Special Kids.

What attracted you to the position?

I have always been drawn to CLT work and have been investigating ways to re-enter the healthcare environment after time away teaching in the Tertiary sector. The position at Very Special Kids came into my awareness from a number of angles, including 2 previous colleagues and a close friend. I knew that with this many people telling me about the position, I had to apply. And I’m so glad I did. The parts of the job that attracted me most was the opportunity to create a CLT program from scratch, working closely with the nursing team and the challenge of the palliative context. I thrive in environments where creativity is encouraged and ideas are nurtured and I knew that was possible here.

What is your reflection within working in a hospice setting as opposed to a clinical area and how do these differ?

The hospice setting is so different to a hospital. My first impression was of the nurses and the pure love, care and kindness shown to the children. The children are not referred to as patients and there is so much room for children to be themselves. The general feel of the environment is more relaxed, but I think the nurses hide their stress well. I do notice the absence of family, in previous roles I have worked closely with the family which helps to get to know the child but that is more difficult here. I like the communal and shared spaces as this allows me to ‘share’ my therapy and approach with others, although this does present some unique challenges.

How do you work with the other hospice therapist?

I am loving the opportunity to work in such a collaborative way with other allied health therapists. I share most of my days with Belinda (Physiotherapist) and she has been a huge help in assisting me to adjust to the environment. It’s so great to work with someone who is willing to collaborate as this has great outcomes professionally and for the children. Since starting we have had our first Allied Health Team meeting and we are working on ways to collaborate, such as planning for children, creating shared therapy goals and providing a comprehensive service to families. We are also very keen to make connections with the Family Support Team in order to understand the needs of children and families in more detail and provide services accordingly.

What have you enjoyed most about your role within Very Special Kids?

I have enjoyed being challenged. It took me a little while to feel comfortable with this but now I accept the gaps in my knowledge and the need to be proactive in filling these. I love to learn, which is what drew me to teaching in the first place, so I am thrilled that I get to do so much learning here, with so many wonderful people

What are you most excited/passionate about to develop within CLT within the hospice?

CLT is about relationships. I am excited to see what influence I can have over how these relationships are developed, nurtured and maintained over time. In addition, how these relationships impact the environment and ultimately outcomes for children, families and staff.