Monthly Archives: August 2022

A woman is pictured indoors, she is smiling at the camera.

A champion for kids’ voices  

Championing the voices of children and young people has been a passion of Meg Chin’s since she began her role with Very Special Kids 11 years ago. 

Meg has been fundamental in the development of our new Rights of the Child Working Group and has been a key voice at symposiums and conferences, presenting on the topic to her peers. 

Exterior image of Losby Gods Golf and Country Club, Norway

Losby Gods Golf and Country Club, Losbyveien, Norway – location of the 2022 meeting of the International Work Group on Death, Dying and Bereavement.

In May 2022, Meg flew to Norway to attend the International Work Group on Death, Dying and Bereavement. While there, Meg participated in a weeklong workshop and shared sector innovation and ideas, collaborated on projects and developed discussion papers for publication. 

Meg has also embarked on her PhD, to better understand what exactly happens to a child in the years after their sibling’s death. Her research project will gather evidence directly from bereaved siblings, aged from five to 12 years old. 

“Research literature does not adequately reflect the important perspectives of children who are experiencing grief,” Meg explains. 

“I think as a society we have a lot more work to do when it comes to how we think and talk about grief. The contributions and perspectives of children will inform how we support and care for children who have experienced the death of a sibling, now and into the future.”

The feedback from the children about being a part of a research project has been very positive and Meg is welcoming further children to the study.   

If you are interested to learn more about Meg’s research and how bereaved siblings can participate, click here or contact Meg at mchin@vsk.org.au. 

 

Jarrod, a young male adult is standing outdoors wearing hiking clothing and hat. He is smiling at the camera.

Meet Youth Advisory Group member Jarrod

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.  YAG has been made possible thanks to the generous support of the Freemasons Foundation. 

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.

Meet Jarrod, interviewed by fellow Youth Advisory Group member Callum. 

First Question, what is your name, age and current year level?
My name is Jarrod, I am 19 years old and am currently studying a dual diploma of Sports Development and Leadership Management at Swinburne’s ‘Richmond Institute’.

Would you want to talk about your sibling and their life? 
My sister’s name is Emma McKee. Emma was diagnosed at birth with a rare form of epilepsy which has left her unable to communicate, and with high needs. She also has the most amazing red hair! 

Now what is a fun fact about yourself? 
Well, on some of my past Very Special Kids trips and camps, I have become the camp riddler, as I’ve collected riddles from my past experiences and continue to confuse others around me to date!

What would you say to other Very Special Kids adolescents thinking about coming along to an adolescent activity? 
I would say give it a try! The atmosphere of being around others in similar situations is extremely humbling and can help you feel at ease over a topic which can cause us all so much stress! The people, environment, history and culture that the Very Special Kids adolescent program has created is inspiring, humbling, yet outstandingly unique. You’re missing out if you don’t!! 

A boy is sitting in his wheelchair, holding a football. His parents are on either side, smiling at the camera.

Who won the Footy Fever Debate?

On Friday 12 August, we held our annual Footy Fever Debate! An afternoon full of football antics, fiery debate and heartfelt words on Very Special Kids vital children’s palliative care services.   

With generous support from our community, we have raised an amazing $190,095, 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. 

Football legends, battled it out on stage to answer the age-old question: would you rather play football today or in the ‘80s?  

The verdict is in, and we can confirm playing football was indeed better in the ‘80s! Congratulations to Jimmy Bartel and Leigh Matthews for their exceptional debating skills and thank you to Matthew Lloyd and David Schwarz for putting up a valiant fight.  

Collage of headshots of four men, they are smiling at the camera.

We were thrilled to receive pledges for 49 nights of respite care, ensuring seriously ill children can continue to receive planned and emergency clinical care when they need it most. 

A big thank you to our MC Heidi Murphy and Mark Allen 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 thank you to our special guests Noah, Kat and Mark Barlow, for generously sharing their story and journey with Very Special Kids.  

A boy is sitting in his wheelchair. He is reading a speech into a microphone.12-year-old Noah, who has mitochondrial disease, bravely shared his journey – receiving a standing ovation from the crowd. During his speech Noah said, 

“Having Mito is very hard at times, but it is all I have ever known…Very Special Kids is there for the really hard stuff but also some brilliant times, especially the camps. I love meeting other people like me and having fun.” 

His mum Kat shared this sentiment, “Very Special Kids is another light in our darkness. They have walked with us through many of our biggest moments… I can’t tell you how essential it is to have someone who will listen to you vent. Who isn’t shocked, or put off, or want to run away from your experience. Or who will offer you a shoulder to cry on knowing tears are meant to be cried.” 

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. 

We would also like to acknowledge our Piggy Bank Appeal partners – ALH Hotels, Commonwealth Bank and 3AW. 

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