Monthly Archives: October 2017

A day to remember

Very Special Kids Remembrance Day was held on Sunday 29 October.

The annual day enables families, volunteers and staff to come together to remember all the special children who have died.

For many families, Remembrance Day is an opportunity to honour and remember their child in a supported space with others who can understand some of their journey.

The Rainbow themed service was held in the beautiful Malvern Town Hall and concluded with a closing ritual and afternoon tea on the grounds at Very Special Kids.

Over 160 family members, along with 60 staff and volunteers were present on the day to remember children that died.

Beautiful words were shared through song, poems, and reflections by parents, siblings and guests, along with a slideshow of photos and candle lighting with rainbow coloured sand.

Families were then given the opportunity to leave rainbow coloured messages to their children in the tree’s at Very Special Kids along with the raising of a special banner which said ‘we love you, we miss you and you are always remembered’.

Afternoon tea on the front lawn provided an opportunity to refuel and connect with others in the warm sunshine. Families were then able to take home the special gift of a rainbow windmill to honour their child.

Thank you to everyone who attended and to Whirly Brighton, The Demon Army, Coloured Sand Australia, Malvern Police, Stonnington Council and all the wonderful volunteers for their support of such an important day.

As spoken on the day…
“It is understood that the beauty of a rainbow does not negate the ravages of any storm.
When a rainbow appears it does not mean that the storm never happened or that we are not still dealing with its aftermath.
It means that something beautiful and full of light has appeared in the midst of the darkness and clouds.
Storm clouds may still hover but the rainbow provides a counterbalance of colour, energy and hope.”

A walk that means the world

17-year-old Ethan Connolly-Kelly takes pride in being a self-determined young man. Ethan has been attending Mates Weekends at Very Special Kids for several years now, with his best friend Ryan.

Ethan’s father Justin see’s the weekends as an invaluable activity for the boys, which is why he and a group of his friends will be participating in the Upstream Challenge this year, for both his son Ethan and Very Special Kids as a whole, on the 11th of November.

The challenge involves a 20 km or 50 km walk along the Yarra River and will raise money to fund the Mates Weekends program at Very Special Kids.

The weekends are designed to bring children together who have high cognitive ability, which are facing similar physical challenges, and ensure they have experiences that they normally wouldn’t have the opportunity to.

Whilst Ethan is very adamant about being independent, he unfortunately however, has conditions that have made it exceptionally hard for him.

Ethan was born with hypopituitarism and hypoglycaemia, which meant he was susceptible to having adrenal crisis if he became unwell. In 2003 when he was just three-years-old this resulted in a stroke, and since then he has suffered from epilepsy, vision impairment, mobility disabilities and intellectual delays.

“Despite the things that hold him back he is exceptionally outgoing, resilient and determined” explains his father Justin, who lives with Ethan and his grandparents in Seaford.

After Ethan’s stroke he was in an induced coma and ended up being in the children’s hospital for 64 days. After this intense time Justin was put in contact with Very Special Kids, and found access to the Hospice for respite exceptionally helpful. “There was nothing out there for children who had suffered strokes, I was a young parent and I felt extremely isolated dealing with this. Having Very Special Kids there created a safety net and gave us a sense of connection, which is extremely vital to both of our well-beings” said Justin.

Since then Very Special Kids has been a constant support to the Kelly family, and Justin explains that “it’s difficult to put in to words the joy that Very Special Kids has brought to our lives, there were things that I couldn’t give my son, but they were able to provide, and it has been amazing.”

Mates Weekends are a great chance for teenagers with limiting conditions to socialise without their parents for a change, but still have the support of carers when they need. It’s a chance for these teens to socialise, feel liberated, and experience things they wouldn’t usually, with others who are in similar situations.

“Mates Weekends gives Ethan a confidence that flows through to other areas of his life. He gets a chance to share normal, exciting stories, and feel more like other teenage boys” said Justin.

If you would like to help provide invaluable experiences for kids like Ethan, please head here to register for the Upstream Challenge 2017.

“We are truly thankful for Very Special Kids, the experience has been invaluable. We look forward to trying to give something back to them at the Upstream Challenge.”


Mayor’s Charity Gala raises $170,000 for Very Special Kids

Stonnington’s Mayor, Cr Jami Klisaris is delighted to announce that the Mayor’s Charity Gala raised $170,000 for Very Special Kids.

The black-tie event was held on Thursday 12 October 2017 and saw one of Australia’s best-loved singers, Tina Arena, perform a selection of her greatest hits in the magnificent setting of the historic Malvern Town Hall. The event was hosted by Cameron Daddo.

“I’m thrilled that we have been able to raise this significant amount of money for Very Special Kids’’, said City of Stonnington Mayor, Cr Jami Klisaris.

“It was a wonderful night of brilliant entertainment and I’m incredibly proud that we are able to support Very Special Kids, a charity that is close to my heart’’.

For Danielle and Richard Burnet, Very Special Kids has played an important part in their lives. Their two eldest sons were diagnosed with an extremely rare genetic condition, Multiple Sulphatase Deficiency and they require 24-hour care.

“Before we were told of Sebastian’s and then Charlie’s diagnosis, we had very few cares in the world, like most other people. Then all of a sudden, you’re hit with this bombshell and it changes your perspective on everything”, says Danielle Burnet.

“On behalf of Very Special Kids, we are delighted for the wonderful support of the City of Stonnington and Mayor, Cr Jami Klisaris,” said Michael Wasley, CEO, Very Special Kids.

It costs more than $7.6 million each year to operate our children’s charity and we rely substantially on the generous support of the community to provide our services, which is why an event like The Mayor’s Charity Gala is so important. Proceeds from the Gala will have a significant impact on achieving our commitment to care and support over 900 children and their families.

“Very Special Kids continues to rely, and be supported, by our local communities in which we operate, and no local community supports Very Special Kids any greater than Stonnington”, says Michael Wasley, CEO, Very Special Kids.

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. They help more than 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement.

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Connecting at North West Family Day

On Saturday, the North West Family Day was held at the Diamond Valley Miniature Railway in Eltham, and again was an absolute hit.

There were a record 104 families registered for the day and despite the rather cold spring conditions 74 people attended. With 5 volunteers and two Family Support Practitioners, Kevin Carlin and Puchi Stern, the day ran smoothly with nothing but meaningful and happy memories being made.

Cake Angels once again provided a multitude of magnificent cupcakes which were enjoyed by all, especially the kids.

The train was manned by the Diamond Valley volunteer crew, who did a fabulous job of running the trains from the commencement of the day at 11am, right up until the fruition at 2.30pm. Trains did not stop and families appeared to really enjoy the rides as evidenced by many smiling faces.

A BBQ lunch was provided and families had the opportunity to sit down have lunch and mingle with one another, getting to know new faces and reminiscing with the familiar ones too. The coffee van provided hot drinks, this was very popular and once again Fairy Mary did a divine job painting children’s faces.

 Our family days give those we support an opportunity to connect with others in similar situations, and enjoy themselves in a fun, social and welcoming environment.

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Giant piggy banks raise $951,623 for Very Special Kids

A huge $951,623 has been raised during the 2017 Piggy Bank Appeal to help more than 900 Victorian families caring for children with life-threatening conditions.

Five giant piggy banks travelled 7,168 kilometers across Victoria collecting donations for the charity Very Special Kids, with the support of 304 volunteers, 88 ALH Group venues, 277 Commonwealth Banks and numerous other businesses and organisations.

Very Special Kids CEO Michael Wasley says the funds raised will enable Very Special Kids to continue its important work.

“We are extremely grateful for the generous support of our corporate partners, our volunteers, and the Victorian community, for enabling us to care for more than 900 families across the state.

“While the future is uncertain for many of these families and their children, one thing they can rely on is that Very Special Kids will be there to offer respite and end-of-life care through the hospice and practical and emotional support through our Family Support Services and Family Service Volunteers, and all free-of-charge.

“It costs $7.6million per year to operate Very Special Kids. Thank you for helping us give these families that certainty,” said Michael.

On Thursday night at the finale event for the 2017 Piggy Bank Appeal, Very Special Kids recognised the businesses, community groups and individuals that worked tirelessly throughout the month of September to raise funds for Very Special Kids, including major partners Seven News Melbourne, Commonwealth Bank and ALH Group.  Awards were presented to those who went the extra mile.

Piggy Bank Appeal Awards

ALH Group

  • Highest Fundraiser for Category A: Glengala Hotel raised $6,098.85
  • Recognition Award for Category A: Westmeadows Hotel raised $4,507.10
  • Highest Fundraiser for Category B: Gateway Hotel raised $10,684.70
  • Recognition Award for Category B: York on Lilydale raised $9,811.00
  • Highest Fundraiser for Category C: Bayswater Hotel raised $10,000.00
  • Recognition Award for Category C: Manningham Hotel raised $8,331.90
  • Overall Highest Fundraising Venue for the ALH Group: Gateway Hotel raised $10,684.70


Commonwealth Bank

  • 1st Highest Fundraising Branch: Shepparton High Street raised $3,561.40
  • 2nd Highest Fundraising Branch: Castlemaine raised $2,782.15
  • 3rd Highest Fundraising Branch: Rosebud raised $1,496.10
  • Branch Recognition Award: Pakenham raised $1,624.25

Lotto Outlet Awards

  • 1st Highest Fundraising Lotto: Inverloch Lotto raised $4,874.15
  • 2nd Highest Fundraising Lotto: Clifton Hill Lotto raised $4,792.95
  • 3rd Highest Fundraising Lotto: Maryborough News & Lotto raised $1,117.55

Community Supporter Awards

  • 1st Highest Community Fundraiser: Pantry in Brighton raised $47,312.65
  • 2nd Highest Community Fundraiser: Westend Market Hotel raised $16,529.32
  • 3rd Highest Community Fundraiser: Keilor East RSL raised $11,600
  • Community Fundraiser Recognition Award: Frankston RSL raised $6,118.50

Volunteer Recognition Awards

  • Rising Star Award: Claire Rasmussen and Mandy Lobley
    This recognition award was too difficult to split so this year we decided to award two very deserving volunteers. Both of these amazing young women are new to Very Special kids and are extremely driven and enthusiastic. They both attended five day Regional Trails for the first time, one while studying full time and the other while working full time. We are thrilled to be able to recognise their contribution to the success of this year’s appeal.
  • Volunteer Recognition Award: Lucy Nicholson
    We were incredibly fortunate to have so many worthy contenders for this award this year, but the decision was ultimately made to honour a volunteer who really stepped out of her comfort zone. Still on P-plates, Lucy undertook our driver training course and learnt how to tow our giant piggy so she could drive on Regional Trails. Taking time out of her university studies, she constantly put her hand up to help whenever necessary and she lead the way with confidence and maturity.


Honouring Macey

Macey came to Very Special Kids in January 2016 for end of life care, when she was just 11-years-old.

We know bereavement embodies a whole spectrum of emotion across a lifetime. It’s ugly, isolating cruel and relentless. It can also incorporate joy, tenderness, beauty, growth and resilience. The deep suffering felt by families symbolises the canyon of love they have for their child. Below is a tiny snapshot of what this has been like for Macey’s Mum and Dad. We thank them for bravely agreeing to share what’s in their heart.

My beautiful daughter, Macey, was diagnosed with a brain tumor December 2014, and passed away on January 15th 2016, one day after her eleventh birthday.  In some ways I feel that parental grief is still new to me, but mostly, I feel like I have been trying to deal with this grief for a lifetime. Below is a list of five constants for me, five things about parental grief that if I could, I would tell the world…

  1. Hearing my daughter’s name in conversations is like music to my ears; a sparkling ray of rainbow light on a cold, drab day. Macey’s horrendous journey of medical treatments and procedures, of sickness, pain and suffering took its toll, so much so, it seems surreal. I often find myself questioning if I ever really had a daughter, if Macey was ever really here? To hear her name tells me she was here! She was loved and she is remembered.
  2. The overwhelming pain of losing Macey is heart wrenching and debilitating. There are times when I am so consumed with this pain that I cannot do anything but sit and cry. I do not want to go anywhere, or do anything or speak to anyone.
  3. People no longer treat me as they used to. Neighbours will cross the street in order to avoid me, friends will not return my calls and there are old friends that we no longer hear from. I understand. I know this is because they find it difficult to speak to me. They don’t know what to say. They don’t want to upset me… But what they do not realise is that I am always hurting, I am always upset and to avoid me only adds to my hurt, my pain.
  4. Some days are better than others, and it is difficult to predict how a day is going to turn out. However, there are special occasions when we know it’s going to be extra tough (Christmas, Easter, Birthdays, Anniversaries, Mother’s Day and Father’s Day). I am always grateful for a sign from loved ones to show that you have remembered us.  A telephone call, a text message can just lighten the heavy cloud of grief. It reminds us that we are loved and supported.
  5. People often say to me, “Oh, you are so amazing, how do you manage to keep going; to get up every day?”  The truth is I am not amazing. I am a mother to another child, who needs me, even more so now that he has lost his only sibling. I get up every day and put on a brave face. I take him to school, kiss him goodbye, and I go off to work. What people don’t see is that I am pretending.  I am pretending that everything is ok, and that I’m ok. I need to do this for Henry, for myself, but most of all I need to this as a way of honouring Macey.
    -Veneta Braybon