Monthly Archives: May 2018

Workplace Giving Month – five reasons to start giving

It’s Workplace Giving Month in June, a time to celebrate and acknowledge employers and employees making a contribution to charities each week, fortnight, month and/or year through their pay! It is also a time where we would like to empower and motivate others to do the same.

Each year through the collective giving from a number of individuals and organisations, workplace giving provides 25 families with access to our Very Special Kids Hospice.

Here are five reasons to start workplace giving for Very Special Kids and join others in making an impact on the lives of Victoria families. 

  1. It’s easy!

Workplace giving is an easy, tax-free way to donate through your pay. Many organisations match their employee’s donations doubling their impact for Very Special Kids.

  1. You will feel good

Knowing you are contributing to Very Special Kids every time you receive your payslip is a nice reminder you are supporting Victorian families going through one of the most challenging times of their lives.

  1. You will feel more connected to your workplace

Your organisation has a workplace giving program for a reason – to give back. Knowing you work for a company who incorporates community support in their strategy to engage employees and make a difference to the wider community is truly special.

  1. Your contribution is helping Very Special Kids sustain its core programs

Workplace giving is untied funding which means Very Special Kids distributes funds to our core programs and services on your behalf. Your support is helping us do what we do best, support families in need.

  1. It is appreciated

Your support does not go unnoticed. All of the children, families and the team at Very Special Kids are so grateful for your generosity, passion and connectedness to what we do.

Click here for more information and to find out how to sign up today.

What our volunteer means to us

Written by Christian & Amanda Ritchie, parents supported by Very Special Kids

Since meeting just over three years ago, Kennedy and Lauren have forged a relationship that extends far beyond what was expected.

At the time Kennedy, an 8 year old bereaved sibling of Avah’s and Lauren, a 20 something new volunteer to Very Special Kids, had little in common apart from a few obvious traits.

Quickly, the two have developed a strong bond where Kennedy now fondly sees Lauren as an older sister, and more importantly, a positive role model.

Getting to know each other further through countless games of Hide and Seek, not so glamorous fashion parades, the construction of indoor blanket cubby houses, and the production of child directed iMovies, the pair have evolved into very good friends that enjoy the company of each other. Now much more comfortable together, it is not uncommon for Lauren and Kennedy to spend time at the beach in Summer or on pocket money spending, shopping expeditions.

It is not only Kennedy who looks forward to Lauren’s regular visits, we both also welcome the arrival of the Very Special Kids volunteer. This time allows an opportunity for us to take a step back from the delicate balance of being both a parent and a proxy sibling to our now only child. It also provides us with the chance to see how Kennedy would have interacted with her younger sister Avah, were she still alive.

Lauren is now seen as an extended member of the family by all of us, who is having an extremely valuable and positive impact on the way that Kennedy is developing into her teenage years whilst dealing with challenges of being a bereaved sibling.

We are forever grateful for the Very Special Kids Family Volunteer program, and the foreseeable life long bond that Lauren and Kennedy have.

kennedy w vol

24 Hour Treadmill Challenge raises over $928,000!

36 treadmills were kept in continuous motion for 24 hours from 9am Fri 25 May to 9am Fri 26 May raising over $928,000 for children in 24 hour care at Very Special Kids Hospice in Melbourne.

Over 1,000 participants including AFL players, politicians, TV personalities and people that have been touched by Very Special Kids, joined forces to keep the treadmills going and raise as much money as possible.

Players from Melbourne City, Melbourne Rebels, Melbourne FC and Melbourne Victory came to show support, many jumping on a treadmill to motivate and entertain participants.

By the end of the 24 Hour Treadmill Challenge participants had covered over 7,200 kilometers, guzzled 651 litres of water, listened to more than 498 songs, and far exceeded the event’s goal to raise $880,000 through donations from friends and family.

To celebrate the end of the 24 hours we held an award ceremony congratulating the top fundraising efforts. This included the highest fundraising corporate, which went to ALH Group who raised $180,475 and the highest fundraising team, which went to Seb & Charlie, who raised $71,788.

The highest fundraising individual was awarded to Paul and Jane Hallam, who were running in a team dedicated to two very special brothers Sebastian and Charlie, who are supported by Very Special Kids. Paul and Jane raised a massive $15,511.

The 24 Hour Treadmill Challenge was made possible through the support of 7 News, 3AW, NOVOFIT, Harry the Hirer and TRUE fitness. We’d also like to thank ALH Group, Rapid Relief Team, Ian & Norin from Race Party,  PFD Foods, Bubba Pizza, Coco Cola Amatil, Carmen’s, Nature Valley, the nurses from the Very Special Kids Hospice, our wonderful MC’s and DJ’s, the 100 volunteers who donated their time and the incredible participants who made the event so special!

Special thanks to all the corporate groups who participated in the event as well, including  Ernst & Young, JBWere, NAB, Guild Group, Toyota Southern Region Office, Toyota Financial Services, Bupa, Cummins, Icon Group, Daimler, Jellis Craig Foundation, DFP recruitment, BSH Home Appliances, LINX Cargo Care, OHM Chartered Accountants, We-ef, Jemena, Telstra, SAS, Hall & Wilcox, Viva Energy, Blue Sky Accounting, Flexed and Westend Market Hotel. We hope to see you all again next year!

See more photos from the event here. 


A weekend to reflect on

Written by Dean Patty, father supported by Very Special Kids

Going through a loss in the family is hard enough but experiencing a child’s death, your child’s death, is difficult to say the least. It was shortly after Allegra’s passing that we attended the Bereaved Parents Weekend.

When Ally died, I didn’t know how to react – I felt anger, despair, sadness, emptiness, disbelief.  How long is acceptable to feel this way? I went into the weekend without any expectations but hoping that I would get an answer on how to cope.

Friday night all the participants met at a pub in Daylesford, had a meal with light conversation before travelling to our destination. Accommodation was fantastic and the meals were great.

As usual in situations like these we all had turns introducing ourselves while holding a photo of our lost child, how long it had been since the event and then placed the photo on a remembrance table and lit a candle. Normally I love talking about my children but found it hard during this session. Her death was still fresh and raw and seeing photos of other beautiful children taken too soon was overwhelming. I didn’t want to be a big slobbering mess in front of these strangers, how would that look to them?  We could return to the remembrance table throughout the weekend and I often did.

Throughout the retreat we had a few organised activities; a group Mandala, massage, meditation walk, various art activities and group discussion sessions. I never felt pressured to participate in anything, in fact that was one of the opening statements made by the VSK team. When things got a little too much or I felt the session didn’t align with my beliefs/thought process, I sat to the side or went to the table.

At meal times we sat with different people and shared our experiences having a child with disabilities, the challenges and normal life stuff too. We wrote a letter to ourselves and Very Special Kids would hold onto it until the date we wanted to receive it. I received mine last year on her first anniversary.

The weekend helped me realise that there is no answer on how I should feel or how long I should feel a certain way. The experience of meeting other families and having someone to chat to that understands what you are going through makes us feel less alone. Very Special Kids has always been a great support to our family when Allegra was alive; hospice stays, family and sibling days. We still receive support during this transition and we are grateful of the continuing support of such a great organisation.


Writing your way through grief

Written by Peggy Hogan, Family Support Practitioner at Very Special Kids

I was having a counselling session one day with a parent whose little boy had died unexpectedly in the night. She had woken in the morning to find him lying silently in his bed, no longer breathing and quite cold. As she told the story of her child’s life and death and how she was struggling to live through this unthinkable loss, it became clear that she wanted to write about his short, miraculous and at times traumatic life, a life that had left a huge imprint on her own.

Writing took place in a special journal at times when she needed to spend time thinking and crying about his death but also remembering his precious life.

It was ultimately quite cathartic. It helped her to remember things she had forgotten…following the ambulance to hospital only to pass it stopped on the roadside with the awful realisation that the paramedics were working on her son to keep him alive. But it opened up funny memories too which had a wonderful, healing quality. What she has at the end of this process is a beautiful, treasured picture in words of her son’s life.

Bernadette Houghton is another parent who writes poetry and here she shares her reasons for writing:

“I started writing poems about Bren back in 2014, a few months after he died. It was a way of keeping him close; and I also wanted to remember all the little things about him that I was afraid of forgetting. Writing these poems helps me focus my grief. It doesn’t take the grief away, just gives me something to think about related to Bren.

I’ve memorized most of my poems, and when I go for walks, I recite them over in my head. This also helps to keep Bren close. “

A Very Special Kids Family Support Practitioners also uses writing as a tool to help her manage and reflect on aspects of her life. As she says, “I write to get all the feelings, frustrations, and random thoughts out of my head.   I just keep writing by hand until it comes to a natural end. I don’t edit while I’m writing. I just let the thoughts, emotions and words spill out onto the page.

Sometimes the writing itself is cathartic and I don’t need to do anymore. But sometimes I find that my writing reveals insight into a particular issue that I’ve been unconsciously thinking about.

I would recommend writing or journaling to anyone, as a way of managing emotions and clarifying thoughts.  It’s a very manageable way to nurture ourselves, and we all need some of that.”

So if you now feel inspired, get the paper, get the pen and start writing.

An intro to Art Therapy, self-care and healing through creative expression

Written by Mei Goh, Family Support Practitioner at Very Special Kids

Art or creative expression has existed since the beginning of human history and has evolved along with humankind. Through archeological discovery we find many forms of creative expressions like cave drawings that record the practices and stories of tribal groups. It is the oldest form of the expression of self and “self- therapy”. While art or creative work serves a decorative, novel or entertaining purpose, it also has a deeper meaning for both individuals and the collective where one can connect to self-understanding, a search for meaning, personal growth and transformation.  Art chronicles and conveys a wide range of emotions, from profound joy to the deepest sorrow, from triumph to trauma.

Art Therapy has grown from the concept that art and creative expression serves as a way for us to make sense and clarify inner experiences that often words alone cannot. The images and processes can help us to understand who we are, to express feelings and ideas, to enhances life and heal past wounds.  It is an education of our senses

Art engages our hands in a process of awakening the senses within our body. Our body is wired to heal and the primitive brain does its best to take care of our body. A person who undergoes trauma, significant loss and stress in life over a prolonged period of time without resolution will develop heightened cortisol levels. Longitudinal studies and research suggests that, prolonged heightened cortisol levels in the body have been known to cause a multitude of health issues.

The role of an Art Therapist is to create and hold a safe space which allows the client’s instinctual senses to go through the motion that their body needs in order to reconnect, rewire and heal.

However, there are many ways for anyone to engage in self-care and healing through creative expressions in our own time and space. You do not have to be a skilled artist or be trained professionally to engage in creative expressions. To start with you might like to try a mindfulness colouring book which are available in every book store. Alternatively, you might find your own creative activity. Maybe it’s an activity that you previously participated in, but for whatever reason was put on the backburner years ago. Remember, it is not about the “art piece you create” but the journey and process you go through in completing the art.

Some of the things you can do are:

  • Drawing
  • Singing
  • Dancing
  • Sculpting
  • Sewing
  • Writing
  • Painting
  • Pottery making and etc.

The meditative processes of immersing your mind and body in creative expression helps a person to reconnect and to release powerful or distressing emotions. Even if it is the practice of putting 15 to 30 minutes aside in our day or week for this creative expression can bring a multitude of benefits to our body and mind.

Some of the benefits of giving yourself time and space for self-creative expression are:

  • Promote growth
  • Soothing
  • Stress reducing
  • Self-expression
  • Emotional reparation
  • Conflict resolution
  • Transformation
  • Relief from overwhelming emotions, crisis or trauma
  • Achieve an increased sense of well-being
  • Enrich your daily life
  • Experience personal change
  • Make sense of that which is painful
  • To become whole


Very Special Kids Autumn Classic fund raises over $136,000

Last Friday morning Very Special Kids held their second Autumn Classic cycling event and raised over $136,000!

Through the hard work of our events team, especially Kristi Ingrilli, and loyal supporters, it was an absolute success, as well as a whole lot of fun.

The event is a virtual cycling race with eight teams onsite participating on their own bikes on an indoor trainer. The riders all competed against each other via software that ‘talked’ to their bike- which even made hills harder to get up!

It was an amazing morning, with a lot of Lycra and competition for a cause. Team Grupetto, took out the win and took home the Autumn Classic perpetual trophy (their second year running), with riders James Robinson, Ryan Bell, Chris Mallalue, Paul Mogford, Andrew Fullard and Belinda Trembath.Second and third place went to Toros and Spiders. Each team went their absolute hardest and it was amazing to see such a serious effort from everyone.

Congratulations also to Neal Dunne for being the highest individual fundraiser on $7,909, Robert Ralph – for creating incredible team spirit within the Toros and encouraging healthy fundraising competition, and team Spiders for being the highest fundraising team.

We’d also like to thank Harry the Hirer, The Cycling Fix, Bridged, ASF Protective Services, Peter Montgomery, Gene Kehoe, Paul McCann and Andrew Macmillan for their amazing support.

It costs 8 million dollars for Very Special Kids to run each year, and because of this it is important that these events take place and grow. We are so grateful to see the Autumn Classic get bigger and better as the years go on!

The philosophy that makes my job one of the best in the world

“Palliative care is often misunderstood. It provides care for the patient as a whole person and works to address suffering of the body, mind and spirit. The goal is to enhance quality of life at all times during a serious or life-threatening illness.” – Daniel Mahoney

Today marks the beginning of National Palliative Care Week, so we wanted to share a special reflection from Very Special Kids hospice nurse Rebecca Meek, on what matters most to her when it comes to paediatric palliative care. 

When asked the question “what matters most?” in paediatric palliative care, many aspects of the job come to mind. I can list off many clinical duties such as pain management, cluster care, communication, nutrition, pressure area care and so on, but when you stand back and think about what really matters most, it is facilitating the child and family’s ability to experience their vulnerable moment of time the way they need to.

I am Bec and I am a Registered Nurse working at Very Special Kids – Victoria’s only children’s hospice. Most of my nursing experience and training was in the Emergency Department of a paediatric hospital setting where goals of care mainly focused on paediatric assessment and life-saving interventions.

Transitioning to paediatric palliative care has expanded my perception of what providing care to children is all about. What soon became obvious when starting at Very Special Kids is that providing optimal care to children with a life-limiting illness needs to encompass the child’s family as it is the family that provides the foundation to the child’s well-being.

This meant stepping back and really trying to see the world from the eyes of the child and family. Some of the main themes that are often presented are emotional fatigue, loss of family cohesion, sleep deprivation, loss of control and despair.

The nursing team at Very Special Kids are a very professional and caring collective that specialise in physical, psychosocial and practical support ranging from intricate delivery of palliative pain management to active listening of a parent vent frustration on the inequality of life. It’s a very diverse profession which can be so rewarding but also so ethically and emotionally challenging.

Nevertheless, there is a strong consensus within our team that Very Special Kids is an essential service and the care we provide invaluable. The team at Very Special Kids provide support services to over 900 families including emergency respite, end-of-life care, counselling, advocacy and bereavement support. Our united holistic approach allows us to deliver quality, family-centred care that includes empathy and respect.

It is this philosophy that makes my job one of the best in the world.

When you need to be heard

When you are feeling overwhelmed and filled with worry it can be very helpful to talk to a good listener or counsellor.

Having a skilled, trusted person listen allows you to tell your story knowing that it will be heard without judgment.

You can speak of feelings that may not have seen the light of day and experience some relief from the weight of those worries.

As one mother supported by Very Special Kids explains, “Talking to my Family Support Practitioner has helped me through some really hard times. She helps me focus on what’s important and I try to let go of the stuff that’s not. Knowing that I can call for a chat anytime helps me a lot.”

When there is a lot going on that is highly emotional it can be very difficult to think clearly, so putting aside some time to talk about what is happening can be extremely helpful.

“It has helped me on a mental level to better cope with things as they arise. Talking about things just really helped me to see things clearer. This then enabled me to be a better functioning person for my family” explains another mother supported by Very Special Kids.

“The process has been fantastic for me.  Having a very sick child can be isolating and scary. It is lovely to have a support person whom you know really understands what you are going through. Curve balls in life still get thrown your way even post treatment/cancer and I have felt lucky to have someone I can speak to about this who understands my whole journey.”

Profiling our therapeutic team – Who is Svett?

Svett has been working as an Art Therapist for the Art Cabriolet at Very Special Kids since 2014. Her relationship with Very Special Kids began with a two week pilot program ran by the Art Cabriolet in 2013, which proved so successful that it turned into a four day program led by Svett every week. The Art Cabriolet is an organisation that provides Creative Art Therapies for children enduring trauma and Very Special Kids are very grateful for their work with our children.

Svett’s passion for creative work with children and families is immediately evident as you step inside the hospice. You may see her at the central table co-creating art with some our most seriously unwell children, aiming to empower them and provide a safe and creative space where they can make art. Her work is person centered, and with a warm and engaging approach she ‘tunes in’ to each child and invites and supports them to have an experience which is very different to their more treatment oriented care. A flicker of a smile, hand movement, and other subtle responses, help her to guide the children. There are often no words as Svett works intuitively, attending to the cues the children give as she creates a space for magic to happen.

There is evidence showing that children with disabilities and serious illness can often miss out on play and creativity, which is so important for a child’s development, with primary focus on more medicalised treatments. Svett with her colleagues from the Art Cabriolet provide balance, and best of all fun. Svett’s way of engaging children and the adults around them is unique, and amazing to watch or be involved with. As she explains “every child is unique and needs to be seen as an individual and not a condition.”

Svett also works gently and sensitively with children and teenagers as they move toward the end of their life, helping children and  families to create a piece of artwork, maybe using hand or footprints or other images to tell a story – a tangible and intimate memory for families to treasure.

Svett has transformed the hospice into a rich and stimulating space. Painted leaves flutter; there is art all around, and during school holidays she and her colleagues provide creative programs and activities carefully geared to the capacity of the children. She has been responsible for winter wonderlands, underwater magic and has a multitude of ideas going forward.

Svett makes the work she does look easy, but she has had long training and experience. She found that her initial training with a Bachelor’s Degree in Psychology had something missing, so after travelling overseas and writing for children and illustrating, she returned to Australia and completed a Diploma in Transpersonal Art Therapy, combined with another degree, a Bachelor of Holistic Counselling. Currently she is doing her Masters in Creative Art Therapy at the Melbourne Institute of Expressive Arts Therapy.

Very Special Kids feels so lucky to have Svett and her students as part of our therapeutic team.

Written by Mary Ryder, Family Support Practitioner at Very Special Kids