Monthly Archives: November 2022

Two adults are sitting on either side of Santa Clause, who is sitting in a big chair. A young girl is sitting on his knee holding a bell. They are all smiling at the camera.

Eve’s story

No parent will ever forget the moment they first lay eyes on their newborn child.

For Eve’s mum and dad, Georgie and Shaun, this moment of joy was quickly overshadowed by fear when they heard their baby wasn’t breathing and Eve’s lungs had collapsed.

Every second that went by in that delivery room was excruciating for Eve’s parents, as they watched their newborn baby fighting for her life. Her doctors didn’t know if she would survive the night.

Georgie said, “We went from crying with happiness when Eve was born to tears of dread and fear when she couldn’t breathe minutes later. I don’t think I’ve ever felt so helpless in my life. It felt like our world was crumbling.”

Image of a baby in a hospital crib with tubes and medical equipment around. Her mum is standing by holding her hand.Some children are born with conditions that are extremely rare and not yet fully understood. Eve was one of those children. She still doesn’t have a precise diagnosis other than she has a type of lung and heart condition called Interstitial Lung Disease and Pulmonary Hypertension. There is no cure or proven treatment plan.

Today, Eve is three years old. Her condition hasn’t changed, and she remains on oxygen 24/7. Each day is uncertain for Eve and her family, so it is vital that they can rely on Very Special Kids’ support services for emotional, clinical and practical support. 

“Very Special Kids is a lifeline to us,” shares Georgie. “They’re our main support network offering everything from respite to advice on equipment, and someone to talk to. They have helped us stay afloat emotionally through the toughest of times.” 

As Georgie and Shaun try their best to keep up with Eve’s complex needs, their Very Special Kids’ Family Support Practitioner, Heidi, provides regular counselling and guidance.

Image of a young girl, with breathing tubes visible. She is smiling at the camera and hugging her newborn brother.Excitingly, the family has welcomed a new member with baby brother Jack’s arrival. But the sad truth is that Eve’s family continue to face enormous hurdles daily.

 Living with the grief of not knowing what will happen means we can be quite confronted by things like kinder coming up. We are always trying to figure out how Eve can connect with kids when she’s attached to this one and a half meter oxygen cord.  

I get a wave of grief for Eve when I see kids on bikes or my mother’s group talking about their kids going to kinder because that’s going to look really different for her.”

It is vital that children like Eve can enjoy the best quality of life and create positive, lasting memories together as a family. Memories like Eve’s recent trip to Glen Osmond Farm, our specialised, free-of-charge family holiday accommodation.

A young girl is sitting outdoors with farmland in the background. Her breathing tubes are visible.Georgie shared, “We’d never be able to go on a holiday if it weren’t for the farm. Very Special Kids provide an opportunity to pack up, go to the beautiful countryside, and just enjoy time as a family. We love it and feel so relaxed there because it is also near the hospital if anything was to go wrong.”

 Your support this Christmas will help a family like Eve’s at every stage of their journey with a life-limiting illness.

There is no better gift you can give a family like Eve’s than your support. This Christmas, please give a special Christmas gift to offer vital support at every stage, from counselling to respite care. 

Please click here to donate today.

Two men are standing in front of a new house, shaking hands. There is a real estate board with a sold sign on it.

A very special charity home

Award-winning home builder, Henley Homes, has helped Very Special Kids build a better quality of life for seriously-ill children and their families with the sale of a double-story family home.   

Located in Bonnie Brook in Melbourne’s outer west, the Very Special Kids charity home sold for $750,000 prior to auction, with 100% of proceeds going towards our holistic palliative care services. 

The funds from this sale have helped us hit our hospice-rebuild target, ensuring we can open the doors to the Sister Margaret Noone Hospice at Very Special Kids House in early 2023 and run the facility for years to come.  

Very Special Kids is the only children’s hospice in Victoria, supporting families with a home-away-from-home while they go through the most challenging life circumstances. The funds raised for this sale will have a profound impact on future generations of the children and families in our care. 

The Very Special Kids charity home marks Henley’s 75th charity home in Australia over 33 years.  

On Tuesday 8 November, we held a “Thank you” breakfast to recognise and celebrate all the project partners and supporters who made this build project possible. 

Ben Griffiths, General Manager of Henley’s completed homes division said: 

“It takes 100+ businesses and individuals to build a charity home and everyone that has been involved is all the better for the experience and reward. Without our trades and suppliers none of this would be possible.” 

Collage of three images: two adults holding a framed photo of their son, a group of tradespeople standing in a kitchen eating breakfast, a group of adults standing outdoors in front of a real estate sign.

Special thank you to Very Special Kids parents, Abigail and Luke, who attended the breakfast to share memories of their late son Matty. Abigail shares: 

“As parents, when you’re handing your child over to somebody you want to know you can trust them. When we rolled Matty in through the double doors [of the hospice], it was like coming into a home, where the kids are playing, and people are interacting.” 

“Everything that Very Special Kids do is so important. It’s not just clinical care but it is supporting our whole family and each individual. No other organisation does that so well. Thankyou Henley and all your suppliers and thank you Very Special Kids.” 

Corporate partnerships like these play such an important role in ensuring that we can continue to provide holistic palliative care to children and young people, and their families well into the future.

A young man with long hair is sitting indoors, smiling at the camera.

Meet Youth Advisory Group member Oliver

The Youth Advisory Group (YAG) is a new initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.   

In this series, our Youth Advisory Group members have interviewed each other to learn a bit more about their day-to-day life experiences and time with Very Special Kids.  

Could you give me your name, age, and current level of education?
My name is Oliver, and I am 19 years old. I am at Deakin University studying a Bachelor of Arts, doing history and literature. 

What is a fun fact about yourself? 
I used to wear an eyepatch to correct my lazy eye. 

If you feel safe doing so, could you share a bit about your sibling and their story? 
My brother’s name is Jonah. He was two years older than me, and he was born with epilepsy. He passed away at the age of 14 in 2015. 

Why do you think it’s important for young people to have a voice? 
For me, living with someone who had a disability while I was young has had such a significant impact on all areas of my life. For me to have a voice and help change the way that people understand how to help those who have disabilities is always going to be worth it. 

Four women are standing indoors smiling at the camera. They are dressed in racewear.

A very special Oaks Day Lunch

On Thursday 3 November, we held a very special Oaks Day Lunch! 

Everyone was dressed to the nines, adorning their favourite fascinator and frock as we raised vital funds for Very Special Kids’ holistic children’s palliative care services.  

Three images - two women sitting at a table, a woman speaking at a lectern, a DJ and a saxophonist smiling and waving at the camera

We are thrilled to announce that over $45,000 was raised to support children and young people with life-limiting conditions, and their families. 

Thank you so much to our fantastic MC Luke Darcy, DJ Miss Dee and saxophonist Justin Hall. A very special thank you to Ace’s mum Bianca, who generously shared her family’s journey. 

Bianca shares, “Very Special Kids are an integral part of our lives. They allow us to have respite, they allow us to recharge and they are there for support…we are really looking forward to the new hospice being open. Ace is so excited!” 

Two images - a woman is standing at a lecturn speaking to the crowd, and a young boy is on the floor smiling at the camera

Thank you again to event sponsors Royal South Yarra Lawn Tennis Club and Lowe Living, and all in-kind sponsors who helped make this event possible. 

Young twin boys are sitting on a sofa. They are wearing Christmas reindeer antlers and holding presents with a big red bow. They are smiling at the camera.

Make your Christmas lights very special

The Christmas season is fast approaching, are you feeling festive?

If you are starting to string up your decorations, and would like to make your festive light display very special by fundraising for Very Special Kids, we want to hear from you!

With your support, Very Special Kids can continue to provide care to children and young people with life-limiting conditions, and their families.

The Very Special Kids team can assist your Christmas lights fundraising through:

  • Posters with a QR code to donate to your individual fundraising page
  • Automatic receipts for online donations (all donations over $2 are tax-deductible)
  • Collection tins for cash donations
  • Providing authority to fundraise for Very Special Kids

To set up your fundraising page and get started, click here.
For more information, please contact Taylah on or 0450 683 808.