Monthly Archives: November 2019

Very Merry Christmas Activities

It’s almost December and community Christmas activities are beginning! There are several ways you can spread the cheer and support Very Special Kids during the festive season.

Malvern Xmas Trees

The Malvern Xmas Tree stall is on again this year, selling on the grounds of Very Special Kids and a second site in Clifton Hill. Very Special Kids receives a percentage of every tree sold from both sites.

The stall will be open from Saturday 30 November until Monday 23 December, selling fresh trees on our front lawn during the following times:
Monday, Wednesday, and Friday from 10am – 5pm
Saturday and Sunday from 7am – 4pm

Delivery available. Price enquiries, and pre-orders can be made at

Rob and Leonie’s Christmas Lights

Rob and Leonie’s Christmas Lights have been running for the last few years and are beloved by the Beaumaris community. They convert their entire front yard into a Christmas wonderland and encourage people to enter and donate to Very Special Kids. Over $8,000 was raised for Very Special Kids in 2018 and this year’s display looks set to be spectacular.

There will be an official Switch On The Lights event on Saturday 7 December at 9pm, all welcome! Otherwise, you can visit every night from 9pm until Christmas Eve.

The address of the lights is 151 Dalgetty Rd, Beaumaris. More information can be found on their Facebook page here.

Waverley Gardens Shopping Centre

Waverley Gardens Shopping Centre are again supporting Very Special Kids throughout December. You can visit the gift-wrapping station from Monday 16 to Monday 23 December to have your presents wrapped, with all money going to support our families. The stall is located outside of Coles, next to Santa’s cave, and will be open 10am – 4pm daily.

Kuranjang Christmas Lights

In only its second year, the Greenland family will have over 15,000 LED lights programmed and synchronized to Christmas tracks. The spectacular show will start on Friday 6 December at 9pm and then run every night. There will be special characters visiting and word has it Christmas Eve might include a visit from the jolly man himself!

You can visit the lights at 14 Melrome Court, Kurunjang.

Entertainment Book

Give Santa a Break and give the Gift of Entertainment! The new digital gift membership is instantly available, valid for 12 months and 20% goes directly to Very Special Kids . The perfect gift for those hard to buy for people in your life! You can order your books here.

If you have any questions about the above activities or you would like more information on how to support Very Special Kids this Christmas, don’t hesitate to get in touch with Brigitte Johnson on

A great day at the annual fair

The Very Special Kids Fair was held on Saturday in glorious sunshine, and raised over $95,000 for families caring for a child with a life threatening condition.

The grounds of Very Special Kids in Malvern were a hive of activity with families enjoying a great day out. Children joined in with Very Special Kids’ own music therapist Pip, and heard a reading of Vikki Conley’s beautiful new book, Christmas Wonder. There were photos galore with Alex the Lion from Madagascar and Dinosaur Train’s Buddy & Tiny and a handball competition with AFL players and mascots. The much-loved Aero Bounce Bungy Trampolines gave big and little kids alike a bird’s eye view of the animal farm and busy food stalls down below.

The fair wouldn’t be the success it is without the ongoing support of individuals and business who kindly donated products and services to help us raise much-needed funds. Thank you to everyone who attended, donated and helped provide a fantastic day.

And of course, a huge thank you to our amazing volunteers, who are so very generous with their time to support our events. You are the lifeblood of Very Special Kids. Thank you for helping to bring hope into the lives of the families that we care for.

You can see the event photos here. Thanks to Gavin Blue for capturing so many happy faces!

A letter to my sons

Dear Damien and Dominic,

I loved you before I ever met you.

When your dad and I found out that we were going to be parents for the first time, we were so excited we couldn’t wait for our family to grow. Finding out that our family would grow by two just doubled our excitement.

For 9 months I carried you both inside of me, as my belly grew so did my heart. I hoped for you to be happy and healthy. I dreamed of all the things you would do in your life and the memories we would make together.

Holding you both for the first time was a moment I’ll never forget, you will forever be my babies.

When we learned that you were sick our entire lives changed but our love for you never will.

I still hope for you to be happy, even if you can’t be healthy. I still dream of all the things you will do in your life and I will cherish every memory we will make together.

I will give you all that I am for the rest of your days and will fight to give you the best life possible.

I sometimes worry for the days when I can no longer carry you in my arms or lift you. When you grow your equipment will too. I worry about how I will be able to care for you and help you experience the world. In these moments, when the fear, sadness and worry sets in, I remind myself we are not alone. We are not alone now and we never will be.

We have each other and we have Very Special Kids. They will help all of us, when we need, to cherish each other and live our lives each day to the best we can.

I love you now, always and forever,


Four year old twins Damien and Dominic were both diagnosed with the same rare genetic life-threatening condition, SMA1 – Spinal Muscular Atrophy. This illness will ultimately cause their tiny bodies to deteriorate to the point where they cannot walk, sit up or breathe on their own.

If you would like help care for Dominic and Damien, please donate today.

Donate here

Your donation will be put to immediate use to provide free of charge respite, family support and end of life care.

Meet Heidi Barber: Family Support Practitioner

Meet Heidi Barber, she’s one of our Family Support Practitioners who works with families across the Mornington Peninsula.

How long have you been at VSK?

I have been a Family Support Practitioner with Very Special Kids for 14.5 yrs.  I was based at our Malvern office and after two years was lucky to be offered the Peninsula Region role.  I’ve worked in offices co-located with the Peninsula Home Hospice, then Anglicare Disability Support Team Rosebud and am now based at the Hastings Community Hub.

What is your background and what were you doing before VSK?

My academic background is in Psychology. I worked for eight years as a Family Support Worker with Frankston City Council supporting vulnerable families and children experiencing a range of challenges including poverty, domestic violence, traumatic experiences, generational unemployment, child protection involvement, and basic parenting challenges as well.

What’s unique about your role?

Very Special Kids offers support that is flexible and intended to respond to the whole family. This family focus allows FSP’s to work with a family over time to identify and respond to relevant needs as they arise. The ongoing support and connection VSK is able to offer makes this role unique. This has meant I have had the pleasure of watching families grow together as they have dealt with the joys and challenges of their lives. This really is quite a privilege.

What attracted you to working at VSK?

I developed an interest in grief and loss during my studies after completing a placement with a hospice service. I went on to complete bereavement counselling studies and when I learned about Very Special Kids I felt this would be fulfilling work for me.  I have always loved working with families and children in particular so the role seemed a good fit.

What do you love about your role?

I love the connections I make with the families that I support and being able to be of some support when things are really tough.   I have also loved witnessing the community that has formed amongst families in the region that I work.  I see a real sense of shared experiences and a level of  understanding that probably is not possible outside of this community of parents and children.

What does a usual day look like?

It is really varied and  may  include visits to families in their homes, phone calls, counselling appointments in my office, planning for group programs, hosting family activities, communicating with volunteers, exploring additional support options and of course the obligatory administration all roles require in this day and age.

What’s something that other health professionals might not know about your role?

They may not be aware that Very Special Kids can offer ongoing support following the death of a child in a family we support.

What is it that gets you out of bed every morning to come to work? (Ie, motivates you)

The understanding that for the families I support anything is possible on a given day and that I would like to be available if my support is needed.

What’s been a highlight during your time at VSK?

The highlights tend to be those moments when I can see that my contribution has been of real value for someone.   Also bearing witness to the exquisite love shown between family members in their actions, advocacy, tenderness and their grief is a beautiful privilege .

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

To honour your own experience, to share it if you would like and to accept support if this is possible – in the way that  you would like to offer this to others in a similar situation.

Tell us a bit about yourself 

I live on the Mornington Peninsula surrounded by nature.  I’m married with two adult children and three grandsons whom I adore.  I love gardening, bushwalking, camping, snorkeling, boating, travelling, reading, cooking, swimming and birdwatching is a bit of a hobby others may not be aware of.

What is one thing about you that might surprise us?

I’m quite introverted and like to spend  time on my own.  Parties are not something I enjoy!

What’s the most common feedback from families you get about the family support service?

Appreciation for the support and consideration shown by the team for their family – often focused on the opportunities VSK has offered their children in particular.

Learn more about our Family Support Services:

Melbourne Cup Carnival – we’ve crossed the finish line!

The 2019 Melbourne Cup Carnival was a great success for Very Special Kids as the Victoria Racing Club’s (VRC) official charity partner. We are thrilled to have raised over $440,000 through the Pin & Win Campaign so far, with donations still being received.

Very Special Kids had a strong presence at the four big race days – Derby Day, Melbourne Cup Day, Oaks Day and Stakes Day – as well as participating in the Melbourne Cup Parade and Oaks Club Lunch. Funds raised will be going to the upcoming rebuild of our children’s hospice in Malvern, due to commence in December 2020.

We are incredibly grateful to the hundreds of volunteers who sold Melbourne Cup souvenir pins with a smile, even when braving the elements. Our volunteers are the backbone of Very Special Kids and we couldn’t have achieved such a fantastic result without their support and commitment. Thank you for being so generous with your time.

We’d also like to thank our wonderful ambassadors who have supported the campaign and shared the important work that we do. Thanks to Rachel Griffiths, Tim Robards, Olivia Molly Rogers, Jess Dempsey, Lorinska Merrington, Lisa Leverington, Caty Price, Suzy Eskander, Kirsten Stanley, Roz Kelly and Chris Judd.

Last, but certainly not least, thank you to the VRC for the opportunity to work together in raising much needed funds for the hospice rebuild. We are very appreciative of their support in this first year of our partnership and look forward to working together in the future.

The Pin & Win Campaign has now closed, and congratulations to the prize winners. Donations are still welcome and can be made here.

Hospice rebuild due to commence December 2020

As many of you may be aware, our hospice is set to be demolished and rebuilt from December 2020.

It was built almost 23 years ago and, because technology and clinical care has advanced since then, it was decided that a complete rebuild was needed to ensure we provide the best level of care well into the future.

The research for this project started two years ago and many of our families have provided  input into what our new hospice should look like. The architects we’ve engaged have done a thorough job in getting us to a near-final design and  Alan, one of the architects, has worked on hospice builds in the UK and has travelled extensively around the world visiting other hospices. The team also based themselves inside the current hospice for a period of time, they’ve met with families and staff, travelled to Hummingbird House in Brisbane, all of which has given them an excellent understanding of our needs.

The new hospice will be three levels and includes separate spaces for art and music therapy, a multi-sensory room, a soft play space, improved clinical room, additional therapy services, including a hydrotherapy pool, and technology to provide clinical care excellence for children with complex care needs.

We have also recently appointed Montlaur, a project management company, who bring strong capability, and experience, and specialise in health projects.  They were also engaged in the refurbishment of the family accommodation units in 2015.

In terms of the arrangements for when the hospice does close, expected to be for 15-18 months, we haven’t finalised those yet. We will be trialling an in-home care pilot and looking into alternative spaces for respite care, but I will be in a better position to share the closure plan in March or April.

The current hospice will operate as usual until at least November/December 2020. Bookings for hospice respite will continue as normal until communicated otherwise.  Events and fundraising activities for 2020 will also go ahead as normal.

We have a major fundraising project in the works that will fund the remaining $7.5m still required for the rebuild following the Federal Government’s $7.5m contribution earlier in the year. Our partnership with the Victoria Racing Club and its Pin and Win fundraiser is helping to raise funds for our new hospice.

There’s still a lot of work to do, but we should all feel proud that, in a few years, we will be providing you, our families, with the most state-of-the-art hospice in Australia.

Please continue to check the Special Lives newsletter, our social media channels and website for further updates.