Monthly Archives: March 2023

A very special camp reflection

Written by Very Special Kids volunteer Janelle

I’ve been lucky enough to be a family volunteer with Very Special Kids for the past two years. I volunteer with an amazing, beautiful family who have welcomed me into their home on a fortnightly basis. Working mostly with the eldest son, Ryan, we have done plenty of colouring, chatting, going out to the park, shops, library, pool, and on his birthday – the movies!

Late last year, the very wonderful family support practitioner, Anna, asked me if I would consider accompanying Ryan to Lord Somers Camp. Lord Somers Camp is a pretty magical place for Very Special Kids’ families to have a shared experience, some respite time for parents and carers, and all their meals cooked for the weekend (I certainly enjoyed this part!)

A young woman and a boy are smiling and waving at the camera from inside a blue ball pit.

A boy is sitting on the back of a motorbike, with a man riding in front. He is holding on and smiling at the camera.

Being entrusted to take care of someone else’s child for a night away is certainly a big responsibility, but also an immense privilege. I was fortunate to also attend the most recent camp in February. [This time] it was easier to know what to expect.

It is difficult to articulate just how special it is to share this weekend with Ryan and other Very Special Kids families. I feel like camp creates a true sense of belonging. I was apprehensive to participate in all of the activities myself, feeling like I didn’t need or deserve them because I am ‘just’ a Very Special Kids volunteer.

However, all of the fantastic staff, families and Lord Somers & Powerhouse volunteers made me feel extremely welcomed, and many remembered us and were very happy to see us back at camp.

A young woman is sitting on the back of a motorbike, with a man riding in front. She is smiling and laughing.

I’ve come to learn that it doesn’t matter how or why you are at camp; it just matters that you are. With that being said, I took my first (and probably last) ride on a Harley Davidson and managed to sneak in a swim at the beach while Ryan played ball games, went on the jumping castle and coloured in with the child-minding volunteers.

I care deeply for Ryan, and seeing someone you care about experience new things, learn new skills and connect with others is so heartwarming.

A particular camp highlight was the reflections at the end of the weekend. Listening to Very Special Kids families share their experiences and what camp means to them is an extraordinary privilege. This is a time where you understand what Very Special Kids means to families. It’s a glimpse into what volunteers mean to these families as well.

It is extremely fulfilling to know you make a difference in people’s lives. I know how grateful Ryan and his family are that I work with them, and I know how grateful Anna and Very Special Kids, as an organisation, are of all their volunteers. But I don’t think they realise how grateful I am. To be able to be involved in camp, family volunteering, and other Very Special Kids’ events is so incredibly meaningful.

A very special ladies lunch

On Friday 17 March, we held a very special ladies lunch!

Everyone was dressed to impress, as we raised vital funds for Very Special Kids’ holistic children’s palliative care services.

We are thrilled to announce that over $70,000 was raised to support children and young people with life-limiting conditions, and their families.

Thank you so much to our fantastic MC Heidy Murphy, DJ Miss Dee and saxophonist Justin Hall. A very special thank you to Margie, who generously shared her family’s journey.

Margie shares, “Very Special Kids means reliability, whether I need them for an emergency or whether it’s a scheduled respite. Their commitment to excellence and the support not only for me, but also my family is something that we really need.

“Thank you, Very Special Kids, for making a difference for my life, my family’s life, for us in disability land. And most importantly, I thank you ladies for being here today and having your generous spirit to soar into our lives.”

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.

A great day on the greens

It was a tee-rific day on the greens on Tuesday! Thank you to everyone who joined our very special golf day and helped us raise vital funds to improve the quality of life of children and young people with life-limiting conditions, and their families.

Thank you so much to our MC John Deeks, auctioneer John Moyle and entertainers’ Peter Thackrah and Greg Champion for keeping everyone entertained throughout the lunch.

We were also honoured to have very special sibling Bailey and his mum Ros join the lunch to share their family’s story and treasured memories of sister and daughter, Coco.

“One of life’s most honouring and most harrowing places to be is determining the wishes of a dying child with no voice, and this is where Very Special Kids entered our lives. They coached, they championed, they supported, they loved, they listened, they sat, and they breathed with us.”
Bailey, Coco’s brother

A young man is standing at a lectern holding a microphone and speaking to the audience. Behind him a Very Special Kids banner can be seen.

A man is smiling at the camera, sitting at a large dining table at an event.

Another incredible speaker was world wheelchair rugby champion, James McQuillan who shared some inspiring words after lunch.

The Woodlands Golf Day was started by Very Special Kids’ parents Penny and Tim, as a tribute to their son Toby, who passed away only eight days after his first birthday. The family still attend year on year and Penny has generously taken photos of the event. Thank you to Penny, Tim and their sons Jake and Lachlan for their ongoing support.

Lastly, thank you to presenting partner Lowe Living, our hole sponsors Centuria Capital Group, Community Bank Parkdale and our in-kind supporters for supporting the event!

Charlotte’s story

In 2019, Charlotte was like any other nine-year-old. She loved to dance, swim and spend time playing with her dolls. However, unlike most nine-year-olds, Charlotte was also facing a very scary diagnosis.

“It began with a few signs of shaking and then she started to experience other symptoms like headaches,” shares Charlotte’s mum Louise.

A visit to the doctor quickly led to a neurological exam and MRI scan, where they discovered a large cyst in Charlotte’s brain.

“I was scared,” Charlotte says. “They told us we had to come in straight away. And the next day we flew to Brisbane. Then that same day, I had my first surgery.”

Charlotte was diagnosed with Labrune syndrome, a genetic condition that has less than 100 recorded cases worldwide. The degenerative disease causes progressive calcification and cysts on the brain, leading to loss of brain function.

Charlotte shares, “No one knew my case. I’m the only person in Australia that has it. In the UK, there is about three families, so it’s a very rare condition.”

As their world turned upside down, the family decided to relocate from Townsville to their hometown of Numurkah in regional Victoria for family support. This is when they were first referred to Very Special Kids.

Support for the whole family

“When we first become involved, I didn’t realise how many amazing things Very Special Kids does for families,” shares Louise. “Now we try and take on all the opportunities that are given to us, because it makes our whole family feel so much joy.”
Louise, Charlotte’s mum

According to Louise, Charlotte’s favourite thing in the world is going to the hospice at Very Special Kids House. Respite care is provided by a specialised team of registered nurses, personal care workers and allied health staff, ensuring each child can create lasting memories during their stay.

Beaming with excitement, Charlotte shares, “It’s like a really fun holiday… I love the arts and craft. I also like dancing, I got [the nurses] onto Just Dance.”

Louise adds, “Charlotte is my sidekick at home and 90% of the time she will get her way. So, her siblings also appreciate being able to spend time with just me when Charlotte stays at Very Special Kids.”

One of her siblings, Grace, is a member of the Very Special Kids’ Youth Advisory Group and recently attended Mittagundi Camp with other adolescent siblings.

Grace shares, “Being a part of the Youth Advisory Group has 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.”

Grace is an active member of the Very Special Kids community and recently completed her volunteer training with our supporting partner, Lord Somers Camp and Power House, so she can be more actively involved in future Very Special Kids family camps.

A group of children and adolescents are watching a woman dressed as a mermaid as she reads to them. They are smiling and clapping

A woman and three adolescent children are standing on a stage outdoors. Two of them are holding microphones and they are wearing costumes, smiling and singing.

Emotional and practical support

Charlotte’s family has also received support and counselling from their Very Special Kids’ family support practitioner, Jenni. As a full-time music teacher and single mother, Louise is so thankful to have Jenni in her corner.

“Jenni has been so supportive. She’s always looking out for us and our welfare. When we first arrived back from Townsville, we were doing it really tough, and she helped the kids and I get back on our feet.

“Everything we’ve done at Very Special Kids is always so beautiful and caring, whether it’s going to the holiday accommodation in Woodend, Lord Somers Camp or Charlotte going to respite. It makes the world of difference,” shares Louise.

When asked what advice Charlotte would offer to other Very Special Kids families who are thinking about going to a Very Special Kids event, Charlotte exclaimed gleefully, “give it a try, you might like it”!

A young adolescent woman is wearing a costume veil, and bright coloured clothing. She is sitting outdoors smiling at the camera.

Meet Youth Advisory Group member Jude

The Youth Advisory Group (YAG) is an 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 member Jude, recently spoke at the Australian Paediatric Palliative Care Conference (APPCC) to teach healthcare professionals about the importance of the Youth Advisory Group. His speech is shared below.

Could you give me your name, age, and current level of education?
My name is Jude, I am 18-year-old, and I am currently doing my VCE studies.

What is a fun fact about yourself?
I can juggle five balls at a time.

If you feel safe doing so, could you share a bit about your sibling and their story?
My late brother Joel, had multiple and complex special needs, but that never stopped Joel from smiling practically on the daily.

What are you enjoying most so far about belonging to the YAG?
A highlight of being involved with Very Special Kids was actually being given a voice in the organisation itself through the Youth Advisory Group.

Jude’s speech at the APPCC

The two most significant things that were added to my life by joining the YAG were meaning and connection.

Here’s what that looked like for me.

Meaning
When I first joined the YAG I was at the peak of depression.

My life lacked drive and motivation, my school and personal life had each declined, and I no longer did things which I loved or simply liked.

I was at an all time low.

There were a number of things which pulled me out of the rut which I was in but today I’ll focus on the part that Very Special Kids and specifically the YAG played.

Very Special Kids has always been a second family to me, somewhere that I’ve felt an understanding that even my closest friends couldn’t give me; understanding that sees right through smiles and laughter; an understanding that sees through tears; an understanding that can see me, a human who is walking this beautiful and painful journey of life with his unique circumstances.

Very Special Kids is an organisation where I could be my entire, authentic self because if I was ok then I could be ok and if I wasn’t ok then I could be not ok. People weren’t scared of that contrast.

When you give someone a say in an organisation that means very much to them, especially as much Very Special Kids means to me; when you tell them that what they have to say is important; when you have regular meetings dedicated to having discussions about what they’re thoughts, cares, concerns, and suggestions are regarding that organisation; you add meaning to their life.

When you do all of that for someone who feels like they have no meaning left in their life like I did, you can help them feel like their existence actually matters again.

Connection
Connection is the second most significant thing which was given to me through being part of the YAG, specifically with my late brother Joel or maybe a better description being the reason that I’m a part of Very Special Kids at all.

I write a lot. I write about most of my thoughts and feelings, even the hard ones, but you won’t find much of any writing that I’ve done about my brother. It’s been about five years now since Joel passed away and particularly over the last two years, I’ve wondered why I couldn’t write about him or how I felt about him not being around.

I’ve always struggled to feel connected with my brother even when he was alive. This might have been due to his complex medical conditions, maybe because he couldn’t verbally communicate, maybe because I didn’t start to realise the impact that he had on my life up until only months ago and I’m still figuring that one out. When I did realise that impact and the connection I had with my older brother, I felt both closer than I had ever been with him, as well as more distant and longing for him to be around again.

Joel changed the way my family lived. So now, in his passing, I ask myself what better way to stay connected to him than to continue to live a life changed. My brother gave me the privileged ability to be part of a different portion of our world, the special needs, medical world, and the world that supports people and families of people in the same or similar situation to the one my brother was in. To be able to participate in and have a say in that world which supports people who are in a similar situation to me is one of the most comforting things I could ever experience because it not only keeps me connected with my brother by being a constant reminder that if it weren’t for him, I literally wouldn’t be here. But it also allows me to help other people who are in my or similar situations. It gives me the ability to stay active in the world that my brother allowed me to live in. That’s how the YAG keeps me connected to Joel.

Those are some of the things that the YAG did for me which I am eternally grateful for.