Monthly Archives: December 2022

Meet Youth Advisory Group member Tayla

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 and current level of education?
Tayla, about to begin year 12.

What is a fun fact about yourself?
I can fold a paper crane in under four minutes

If you feel safe doing so, could you share a bit about your sibling and their story?
My brother, Charlie passed away when he was a month old in 2019

What’s been a highlight that’s stayed with you from your time involved with Very Special Kids?
Mittagundi 2022 was the first ever camp I had attended through Very Special Kids. It was a wonderful experience making connections and having non-judgmental conversations with people who have been through the same things that I’ve been through. It also opened up a new career path.

Shaving for a very special cause

Sandringham East Primary School has taught students a very special lesson about giving back to the community.

In early December, a brave group of year five and six students shaved their heads to help raise vital funds for Very Special Kids and improve the quality of life of children and young people with life-limiting conditions, and their families.

Teacher Simon Hargreaves, who initiated the fundraiser shares, “We’ve been talking about gratitude a lot lately. We are so blessed and it’s really easy to forget how much we have and how lucky we are.

“This is an opportunity for us to support an amazing charity that does such great work giving kids a chance, kids who don’t necessarily have the same health that we have. This is a way for us to give something back, and for the kids to have a hand in that.”

One parent who was extremely moved by the fundraiser, was Very Special Kids mum Kylie, whose 11-year-old daughter Isabelle attends the school.

The family have used Very Special Kids services since 2018, after their youngest son Mitchell was born with a severe brain condition that causes him to have unprovoked and recurring seizures.

Kylie shares, “We were absolutely thrilled to hear Very Special Kids had been selected by Simon Hargreaves for the SEPS Great Shave. Isabelle was overwhelmed with emotion when they announced it at assembly, she felt very proud.

“We cannot thank the teachers, students and all the volunteers enough for this incredible gesture. And to everyone who has donated, thank you! It was a fantastic day and we were honoured to be a small part of it.”

You can learn more about the Sandringham East Primary School Fundraiser here.

Christmas lights shine bright for Jonah

This year, Brett and Amy will light up Kurunjang with their annual Christmas in Melrome Court Light Show, for its fifth year running.

The display features more than 45,000 programmable individual LED lights and will raise vital funds for Very Special Kids, who has supported the family since their son Jonah died from a genetic condition at just 90 minutes old in 2018.

“When we found out we were facing some very dark times with Jonah and his twin, Caleb, the team at Very Special Kids were unbelievable. Each decision they supported us, listened to our family and still today are alongside us to help provide counselling and regular meetings,” Brett shares.

Brett, Amy and their four children have access to a dedicated Family Support Practitioner and can attend family networking programs and events, such as an annual weekend retreat for bereaved parents, camps, scrapbooking and art workshops, and even access to holiday accommodation, free of charge.

To date, the family’s Christmas in Melrome Court Light Show has raised thousands of dollars for Very Special Kids, helping more Victorian families like theirs access the emotional, clinical and practical support they need during the most difficult time.

“Jonah has become the centre and light of our life and via our lights display we get the privilege to honour his story every year… We do it for the community and to raise hope and awareness that no matter what you’re facing there can still be joy and light in the darkest of places.

“Many of our team have either watched us or know a loved one who has lost a child or is dealing with a palliative care situation… I know first-hand where the fundraising goes which is somewhat the best feeling in this entire journey regarding Jonah and raising funds for Very Special Kids.”

The light show features three different themed sets, running between 15 to 20 minutes in duration. There will be crowd favourites, including songs from famous movies; Toy Story, Aladdin and The Little Mermaid – as well as classic Christmas carol tunes.

A highlight of the evening, Guy Sebastian song Choir, will feature in memory of Jonah. The song took over 300 hours to programme and incorporates a hand drawn, pixelised Guy Sebastian and choir group.

The show opened on Friday 9 December, with Melrome Court closed to the general public with local traffic access only. Visitors are advised to park nearby.

The Melrome Court light show has been made possible thanks to a large team of volunteers and local businesses, including West Traffic, who have donated their services free of charge. Brett’s family are also grateful to have the support of their neighbours year on year.

There will also be very special character mascots attending the light show, so children can get their photo with some familiar faces, including Santa, Snow White and Bluey, starting from Friday, December 16.

To donate to Brett and Amy’s light’s display please click here.

Making art from memories

‘Creating Memories’ is a scrapbooking activity where bereaved parents can preserve and enhance valuable keepsakes, to honour the memory of their child.

The sessions are run bi-monthly at Very Special Kids and facilitated by Gerry Silk, a long-term Very Special Kids volunteer who has kindly shared her scrapbooking skills to guide parents through the scrapbooking process.

Scrapbooking after the death of a loved one can be an emotional and challenging experience. It can also be therapeutic, helping families to grieve and heal, while keeping the memory of their loved one alive.

One Very Special Kids mother, Anita, who has attended the scrapbooking sessions for nine years shares,

“I am really grateful to Very Special Kids for creating such a wonderful initiative. These sessions have enabled me to create beautiful albums for our daughters as a special keepsake of their brother Luke. I presented them with the albums on their 13th and 21st birthday and they both really appreciate them. Our youngest daughter was only 5 years old when Luke passed away, and as her memories fade over the years her album enables her to see the beautiful connection she had with her adoring brother.

“I also really value these sessions as my Luke days. They enable me to put aside time in my busy schedule so that I have days which are just about Luke.

“They are also a safe environment which enables the attendees to share thoughts and feelings with others who have also experienced the terrible loss of their beloved child.”

In the distance, adults are sitting at a table doing scrapbooking. In the foreground there are lit taper candles and roses in a vase. Agreeing with this sentiment, bereaved mother Leanne adds,

“Even though I was a little hesitant about attending my first creating memories session with Very Special Kids, I’m so glad I pushed myself to go.

“Not only have we created a beautiful and heartwarming album of photos and memories of my son (which is a work in progress), but I connected with people who ‘get it’. I feel welcomed and safe coming to these sessions, where I can have a creative outlet, but also share stories and even sit in silence.

“It feels comfortable, and I feel supported and not quite so alone in this world of grief. Thank you to Very Special Kids and the team of volunteers who make activities like this possible. These sessions mean the world to me.”

Our ‘Creating Memories’ sessions will return in March 2023. The sessions are jointly run by Very Special Kids and Red Nose.

We understand Very Special Kids parents who are navigating grief may not feel ready for our workshop. The program will be here to welcome families whenever they are ready to learn more.

To contact someone regarding the program please click here.

Supporting Very Special Kids this festive season

It may be December already, but 2022 is not over yet! Thanks to our very special community hosting Christmas fundraising activities, there are plenty of ways you can support Very Special Kids this festive season!

City of Stonnington Carols

Very Special Kids is proud to be the selected charity of this year’s City of Stonnington Carols. 100% of proceeds from the sale of candles and event programs at both carols events will go to Very Special Kids.

Family Christmas at Central Park – Sunday 11 December. Activities from 6.30pm, carols from 7.30pm

Carols at Como Park – Sunday 18 December. Roving performers from 6.30pm, carols from 7.30pm

For more details, please click here.

Malvern Xmas Trees – SOLD OUT!

Malvern Xmas Trees are selling beautiful fresh Christmas trees again this year, and donating a portion of each sale to Very Special Kids.

You can choose your tree in person at:

Very Special Kids, 321 Glenferrie Road, Malvern. Saturday and Sunday, 7am to 5pm.

St George’s Church (just across the road from Very Special Kids). Monday to Friday, 10am to 5pm.

You can also order online and arrange delivery – easy!

PayPal Give at Checkout

PayPal is making it easy to support Very Special Kids this festive season by featuring us in their “Give at Checkout” campaign throughout December.

Set us as your favourite PayPal charity, then when you make an online purchase with PayPal, you’ll have the opportunity to donate $1 to help us continue providing palliative care for children, young people and their families. Now is the time to get your Christmas shopping wrapped up and show your support to Very Special Kids.

Click here to visit our profile and click the heart to get started!

Very Special Christmas lights

We are thrilled to have some very festive friends raising funds for Very Special Kids through their Christmas light displays. For location details and to support, please click here.

Two long term supporters of Very Special Kids are also returning with their spectacular displays this Christmas.

Melrome Court Kurunjang Christmas Lights (above left)
The Greenland family has raised thousands for Very Special Kids over the years through their amazing display. This year, they are aiming to add another $3,000 to the tally, in memory of Jonah who tragically died just 90 minutes after birth.
The light show launches on Friday 9 December and will run until Thursday 29 December at 14 Melrome Court, Kuranjang. For more information and to keep up to date, click here.

Rob and Leonie’s Christmas Lights (above right)
Returning this year, Rob and Leonie’s Christmas Lights are much loved by the Beaumaris community. Their entire front yard is converted into a Christmas wonderland and Rob and Leonie are aiming to raise $10,000 for Very Special Kids this year.
You can visit every night from 9pm until Christmas Eve at 151 Dalgetty Rd, Beaumaris. For more information and to keep up to date, click here.

Meet Youth Advisory Group member Grace

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?
Grace Hall, 16 years old, year 10 student.

What is a fun fact about yourself?
I really like music and theatre.

If you feel safe doing so, could you share a bit about your sibling and their story?
My sister’s name is Charlotte, and she is 12. She has Leukoencephalopathy, the short name is Labrune syndrome. It causes cerebral calcifications, and cysts (LCC). At any one given time there are about 50 people in the world diagnosed with it.

What are you enjoying most so far about belonging to the YAG?
So far, my favourite thing about being a part of YAG has been being a part of a group of people with similar experiences to me and having a say in some of the aspects of Very Special Kids.
I joined Very Special Kids during COVID-19 and haven’t been able to participate in many activities they offer. So being a part of this group allowed me to meet people with similar experiences to me and have a say in things that affect others like me. I have always wanted to help others.

The end-of-year family day is back!

On Sunday 20 November, over 60 Very Special Kids’ families joined us at our Malvern grounds for our first end-of-year family day in two years.

The weather was wild and unpredictable but remained no match for the joy and laughter of all the children who attended. There was entertainment galore with interactive stalls, fun activities and special guests to keep the kids captivated.

The holiday season can be a stressful time for children and young people with life-limiting conditions, and their families. Events like this, enable Very Special Kids families to come together in a safe and supportive environment.

Our Youth Advisory Group – Very Special Kids siblings aged between 14 to 25 – hosted a variety of ball games and fun activities for everyone to participate in. While the animal barn and reptile encounters offered children the chance to interact with scaly and furry friends!

The arrival of Santa was highly anticipated and, on a firetruck provided by the Glen Iris & Windsor teams from Fire Rescue Victoria, certainly didn’t disappoint.

Families also had photos with Santa in the ‘Santa Cave’ and family portraits provided free of charge by Heartfelt Photography. There was also an opportunity for parents and carers to visit our pop-up toy store and purchase discounted gifts for the holiday season, with all proceeds going back towards Very Special Kids services.

The Very Special Kids end-of-year family day would not have been possible without the support of our marvellous volunteers who provided support in the lead up and on the day. Special mention to our volunteer bakers who cooked up some sweet treats, as well as our artistic face painters who created some masterpiece designs!

We are so grateful to all our wonderful suppliers, many who gifted their services for the day or time, free-of-charge.