Monthly Archives: August 2023

A group of people are standing in front of a newly build building. They are all wearing Very Special Kids t-shirts and are smiling at the camera.

A very special family open day

Written by volunteer, Georgie Johnstone

Sunday 6 August. For many Melburnians, another cold, dreary morning, but for Very Special Kids families, staff and a few lucky volunteers, it was a very special occasion indeed – the first chance for families to experience the new Very Special Kids House.

As families entered, any initial apprehension quickly turned to amazement and appreciation for the hard work over the last few years, spearheaded by Sister Margaret and CEO Michael Wasley.

Guiding families around was such an honour. Faces old and new took in the new fish tank, the dedicated adolescent room and the 360-degree outdoor area festooned with colourful birds. The new soft play area, music/art space and ever popular, upgraded sensory room got an absolute workout.

 Accommodation was explored, from the abundance of storage space, the thoughtful concealment of medical equipment, alongside hoist tracks ensuring access throughout.

One child wouldn’t leave until they’d thoroughly checked out every room before picking the “best” one for their future stay! The highlight for many was the balmy hydrotherapy pool, with physio Belinda welcoming in families who queued up like entering an exclusive club!

But more than the state-of-the-art facilities, it was the vibrancy and warmth bought to Very Special Kids House by those present. It was Kirsty, the Hospice Manager and her wonderful team creating the space and time to connect with families, answer as many questions as they needed, and the disbelief in parents’ eyes when they heard “Yes, this is free”.

It was family members who reminisced on times both happy and sad spent at the old hospice, and the bittersweet emotions for those who didn’t have the opportunity to. But most of all it was the energy of the kids, doing laps around Sister Margaret in their wheelchairs, pounding the drumskins without a care in the world, full of joy, smiles and laughter.

As families, staff and volunteers make the jump into full operations over the next few weeks, it is this energy and compassion we all bring which will make Very Special Kids House, truly a home away from home.

A young girl is sitting in a wheelchair with an older lady next to her. They are both laughing and smiling.

Leave a gift to Very Special Kids

For over 33 years, Very Special Kids has been providing holistic palliative care for children and young people, and tailored support for their families. This includes respite in Victoria’s only children’s hospice, trained volunteer support in the home and hospital, bereavement support, and sibling programs for families at the most difficult of times.

A boy is in a car ride smiling and laughing, his breathing tubes are visible. Next to him a young woman is sitting and helping him drive.

This work is made possible through generous gifts in Will. Every gift, no matter what the size, makes an incredible difference. It is a thoughtful way to continue your legacy and make a difference for children and young people with life-limiting conditions for generations to come.

How to write a Will online

  1. Fill out online: Follow step-by-step guide to write your will in under 20 minutes with either of our online Will partners: Gathered Here and Safewill
  2. Print your Will: Download for free and print a copy
  3. Sign and witness: Sign and witness to complete your legally valid Will

GatheredHere logo
Unlimited Free Will offer. Access to free and unlimited updates of your Will for life.
Click here for your free Will with Gathered Here.
Safewill logo
50% discount offer. Each Will reviewed by an Australian Solicitor.
Click here for your discounted Will with Safewill.

Frequently asked questions

Why is it important to have a Will?
Writing a Will today is one of the most important ways you can protect your family, appoint guardians for your children and set out how you want to divide your estate and leave gifts to charities that mean the most to you. Our online Will-writing partners, Gathered Here and Safewill, provide a quick and cost-effective service to allow you to complete your Will online in the comfort of your home, in as little as 20 minutes.

Are online Wills valid and legally binding?
Yes. Provided that you meet the usual requirements for creating a Will (namely, you have testamentary capacity and are of sound mind, are over the age of 18, make the Will voluntarily, and follow the required signing and witnessing formalities), a Will made online will be legally valid and binding. Reference: Gathered Here.

How do I plan my Estate involving children with high care needs?
Ensuring children with special needs are well looked after requires careful planning and the right advice. Raising children is challenging at the best of times, but for parents of children with special needs it can bring additional concerns, such as who will take care of my child after I am gone and how will they cope financially? Click here for a helpful article published by Australian Executor Trustees, with further information to help get started.

Other questions?
For further informaton, visit Gathered Here or Safewill.

Two people are standing on stage, holding microphones and speaking to the crowd. A woman is standing at a lectern. Behind them is a Very Special Kids banner.

A fiery Footy Fever Debate

On Friday 11 August, we held our annual Footy Fever Debate!

There were no-holds barred as our two teams tackled our contentious debate topic: AFL rule changes have improved the game.

At the start of the lunch, not a single hand was raised in favour of this statement, but our persuasive panellists managed to flip the audience’s opinion! Congratulations to Matthew Richardson and Matt Granland for their exceptional debating skills and thank you to Rohan Connolly and Shane McInnes for putting up a valiant fight.

A man is standing on stage at a lectern, speaking to a crowd. Behind him is a Very Special Kids banner. Three other men and a woman are also sitting on stage, smiling and laughing.
Matthew Richardson puts his winning case forward, arguing that “AFL rule changes have improved the game”.

In addition to spectating a fabulous debate, our generous audience helped us raise more than $190,000, helping us to continue providing the best quality of life to children and young people with life-limiting conditions, and tailored support for their families across Victoria.

We were thrilled to receive pledges for 37 nights of respite care, ensuring seriously ill children can continue to receive round-the-clock care at Victoria’s only children’s hospice, Very Special Kids House. 

A big thank you to our MC Heidi Murphy for hosting a great afternoon, and our musicians Russell Robertson and Phil Ceberano for keeping everyone entertained throughout the afternoon.

We would also like to extend a special thank you to Andrew and Claire, who generously shared their story and journey with Very Special Kids.

Their daughters Emily (6) and Olivia (4), pictured below, both have high complex care needs and are supported by Very Special Kids.

Speaking on stage Claire shared, “Very Special Kids is the respite, that round-the-clock care that other services aren’t able to provide… It can be quite a lonely journey, having children with life-limiting conditions, so the opportunity for not only the respite, but family support workers, counselling, as well as camps like Lord Somers Camp that we can meet other families and have some fun is amazing.”

Andrew added: “There’s just that element that if something happens to us, we have that back-up, which is incredible. It gives you a great sense of comfort… which is just amazing, and we can’t get that anywhere else. Just a massive help.”

Special thanks to our presenting partners 3AW and Lowe Living, supporting sponsors Crown, Lion, Vino Society and Helping Hand Group and all in kind supporters. Without your support, the Footy Fever Debate wouldn’t have been possible.

Thank you to everyone involved for a great afternoon. We look forward to seeing everyone again next year!

‘Funeral tips for kids’ written by a bereaved sibling

Every year, ‘Dying to Know Day’ encourages conversation and community actions around death, dying and bereavement.

Talking about death and dying can be tough. But keeping communication channels open can often help things seem less scary.

Aria and her brother, Valentino

We are honoured to share some thoughtful funeral tips that were written by very special sibling Aria after she attended her brother Valentino’s funeral.

She specifically wanted to share these tips to help other kids know what to expect when attending the funeral of their brother or sister.

Aria is now nine years old and is a proud member of Very Special Kids’ first Child Advisory Group – a youth led initiative that provides siblings aged between eight and 13 years old a chance to share their thoughts and ideas with Very Special Kids.

Funeral tips for kids, written by Aria
I am seven years old and when I was six, I went to my brother’s funeral. I had never been to a funeral before. I thought I knew what to expect but there were lots of things I did not know about funerals. I want to help other kids prepare for a funeral.

Here are some things I would like to tell you about going to a funeral for your brother or sister:

  • You might cry or you might not cry, but expect to see other people crying
  • You might see a lot of photos of your person, and these might make you cry
  • You might have to listen to lots of different people talking
  • You might see a coffin. You might see the coffin be carried or rolled on a special trolley. You might see the coffin being put into the back of a special car for coffins
  • After a funeral, you might meet together with family and friends and have something to eat, and you can play with your family and friends
  • You might feel many things at the funeral – sad, upset, angry, curious, interested, unsure, happy and many, many more
Ten drawn faces depicting different feelings and emotions

Things I would like to tell their grownups:

  • Please tell kids before they go to a funeral all the things they might see and hear and do and expect 
  • Please tell kids about how their person died
  • Please know that sometimes siblings think it is their fault their person has died
  • Please think about the kids at funerals and make the funeral of their person ‘kid friendly’
  • Please ask kids if they want to help with funeral preparations – we have lots of ideas and like to be involved
  • Please show kids the slide show of photos of their brother or sister before the funeral so they know what to expect

As a children’s palliative care organisation, Very Special Kids works to make the world a better, more supportive and knowledgeable place for families who are suffering through the death of a child or young person.

To learn more about our bereavement support services please click here.