“She was the kindest soul, always saying yes to everything, no matter how difficult it seemed.”

However, life wasn’t always easy. Jen’s condition required constant care and attention, which sometimes made ordinary sibling activities a challenge.

When Liz was just 11, she was introduced to Very Special Kids, an organisation that would become a cornerstone in her life. The sibling support program offered by Very Special Kids opened up a world where Liz could connect with other children who, like her, had siblings with life-limiting conditions.

Liz reminisces about the sibling days and camps, “It was just so nice to have people that I could relate to.” The activities at a sibling camp can range from thrilling adventures like ziplining to more reflective group discussions, creating a safe and fun environment for children and young people to bond and share their experiences.

For Liz, these moments were not just about fun, they helped her feel seen and heard. During these times, Liz realised the profound impact of having a support network tailored specifically for siblings like her. These experiences were crucial in shaping her understanding of community and empathy, values that would guide her in the years to come.

In July 2021, Jen’s death left a void that seemed impossible to fill.

Liz’s grief was compounded by the lack of resources for bereaved siblings her age. She struggled to find a place where she could relate to others who had lost a sibling with significant disabilities.

After weeks of searching and feeling increasingly desperate, Liz reached out to Very Special Kids, hoping for a lifeline.

What she found was the Youth Advisory Group (YAG), a new initiative aimed at giving young people a voice in shaping services and support for families like hers.

“Having an opportunity to be able to talk and advocate for siblings and have impact on a sibling program is amazing,” Liz explains. Liz’s involvement with YAG allowed her to connect with Very Special Kids meaningfully and get the support she needed while also providing her with a space to advocate for better support systems for siblings.

“It means a lot because a lot of the resources out there for just general grief and also general support are just for parents or not for siblings. So being able to connect with siblings is really important and helps me a lot mentally.”

Through YAG, Liz has found her voice as an advocate, channelling her grief and love for her sister into meaningful action. She is now studying for a Bachelor of Social Work, driven by a passion for ensuring that siblings like her have the support and resources they need.

Liz’s work with YAG has not only helped her heal but also given her a sense of purpose. She feels that she is honouring her sister’s legacy by contributing to developing sibling support services.

“At the end of the day, I know it’s what my sister would want me to be doing and would be proud of me for doing so,” Liz says with quiet determination.

Being part of YAG has shown Liz the importance of giving young people a voice in creating services that truly meet their needs.

The group’s efforts are paving the way for more inclusive and practical support for siblings of very special kids, ensuring that their unique experiences are recognised and valued.

On Saturday 23 November, Very Special Kids hosted another truly memorable end-of-year family day at our Malvern grounds for close to 300 children, siblings, parents and carers.

The talented Bubble Tonic wowed crowds with their mesmerising bubble art, while Wild Canary’s live music filled the air with joyful tunes.

Face painters created stunning designs for the kids, and Spiderman and Ghost-Spider made a special appearance, engaging with families.

The Melbourne City Wrestlers also put on a fun and energetic display, ensuring the excitement never waned, even in the 39-degree heat!

Another exciting moment of the day was when our friends at Fire Rescue Victoria from Glen Iris station arrived. They recruited some ‘junior firefighters’ and let the kids have a blast spraying the hose, helping to cool down the garden and bringing smiles to faces all around.

Thank you to Rapid Relief Team for their ongoing support at events like this, ensuring families were well fed during their fun day out.

This incredible day of celebration would not have been possible without the unwavering support of our devoted volunteers. Their hard work in the lead-up and on the day ensured everything ran smoothly, and we are truly grateful for their dedication.

We also want to extend our heartfelt thanks to all our suppliers, many of whom generously offered their services or time free of charge, helping to make the event a resounding success.

The end-of-year family day was a beautiful reminder of the strength of community and the power of coming together to create joyful memories. We are so grateful to all who made this day possible and look forward to many more moments of connection and celebration in the future.

Five-year-old Nishan may be tiny — less than half the size of other boys his age — but his little heart is bursting with love.

When Nishan smiles, his eyes sparkle and he lights up the room. He’s non-verbal, but Nishan knows exactly how to tell his family he’s happy.

His mum Sam, dad Bhupinder and sister Mehar shower him with affection every day, making the most of every second they have with little Nishan, because they know they could lose him at any moment.

Nishan has a rare and life-limiting neurodevelopmental disorder that affects just three known children in the world.

There is no cure and experts have no proven treatment plan.

Living with the stress of uncertainty, plus Nishan’s round-the-clock care, is putting an unbearable strain on this loving family. It’s a weight that no family should have to carry alone.

This Christmas, we’re aiming to raise $118,000 to help ensure that very special families, like Nishan’s, have access to tailored counselling and therapeutic support provided by one of our family support practitioners. This highly skilled team of professionals includes social workers, psychologists, psychotherapists, family therapists and play therapists.

For Nishan’s family, their family support practitioner – Jenn – has become a vital source of comfort and guidance.

Nishan came into the world a healthy and happy boy, but at six months of age, Nishan started having difficulty eating.

That’s when Sam and Bhupinder were told Nishan’s condition was going to be incurable.

It’s at times like this, when the shock and trauma are overwhelming, that family support practitioners like Jenn are a lifeline.

Sam first met Jenn after she received Nishan’s diagnosis — along with the terrible news that her son could die in as little as a month. The family was devastated. Sam told us,

Family support practitioners provide counselling and therapeutic support to very special children and their families from diagnosis and treatment, through to end of life and bereavement.

They often witness emotional, existential and spiritual suffering, while supporting families to have honest conversations about death, dying, and grief.

When Sam received her first call from Very Special Kids, she was overcome by Jenn’s empathy and understanding. For the first time since Nishan’s diagnosis, Sam felt she wasn’t alone:

This is the profound impact our staff can have on the lives of families like Nishan’s. But Jenn is only one of eighteen family support practitioners who cover the entire state.

Will you give another family like Nishan’s the comfort of knowing they are not alone by sending a kind Christmas gift today?

Christmas can be a stressful time for many of us, but for a family who has a seriously ill child, it can prove completely overwhelming. Please give the gift of comfort this Christmas for a family like Nishan’s. 

The festive season is just around the corner and our very special community is hosting an array of festive fundraising activities! Here are a few ways you can support Very Special Kids this Christmas:

You can support our Christmas Appeal and read Nishan’s full story here.

On Sunday 27 October, bereaved families in our community came together to participate in A Walk to Remember.

This event was centred around community, connection, legacy and paying tribute to the beautiful children and young people who live on in our memories.

We are so grateful to all who attended and contributed to this special event in Malvern. One mum, Kath, shared a beautiful reflection of the day and what it meant to her family.

I can’t describe all my feelings in words about yesterday but let’s just say I felt it was a magical and very special day.

Definitely a hard day and brought up a lot of different emotions and today I feel I’ve kept reflecting most of the day as well as talking out loud to Lucie beside her grave. I’ve been fairly closed up since she died and have tried to just put on a brave face.

Walking around the gardens helped me just to breathe and reminded me a lot of Leunig’s cartoon of sitting by a tree.

It really made me think about how I spent so many of the COVID days just walking with the girls in the Bugaboo pram and looking at nature as I walked.

I had forgotten how much it helped me in the early days.

The choir was just beautiful. They were just so relaxing and I loved the choice of songs.

The activities set out for the families and children were absolutely wonderful. The time, thought, organisation and dedication this must have taken is huge. The beautiful clay table was so gorgeous and Ana enjoyed this a lot. I loved the nature table and being able to choose some beautiful flowers and nature items for our child was really special. The activities for the children and families scattered around were so much fun. We couldn’t get Ana to leave!

The volunteers are such amazing people and were so focused on having ‘fun’ with all the siblings and families.

The food was so delicious and we were not expecting so much catering. We were so full but somehow kept on eating as it was so yummy!! Thank you for catering for us picky gluten free people! My dad couldn’t stop talking about the organisation all the way home and he was like a little kid going in to tell my mum all about the day!

We were never hesitant about coming to A Walk to Remember as we feel so comfortable at Very Special Kids. Even though we have very ‘sad’ memories about Lucie’s end-of-life at the hospice, we also have happiness sitting beside it as well, as we were all treated like royalty during that time.

Everyone was so truly devoted to what they do and had a greater understanding of imagining what it must be like to go through such heartbreak and devastation as what losing a child must be like. We all hear ‘I can’t imagine’ but I really feel the staff all try to imagine what it must feel like by listening to all the families and making the best Walk to Remember day for everyone.

Thank you again from the bottom of our hearts. You are absolutely amazing people and we love you all.

 – Family of our beautiful Lucie

A structured yet flexible program helped young people build up the confidence to step outside their comfort zone. Also offering chance for connection with other siblings who understand what it means to have or have had a sibling with a life-limiting condition.

16-year-old Liv shared what the five-day experience meant to her:

“Mittagundi Camp was a great experience for me and I really recommend it for anyone thinking of going.  

“A few days before the camp I was very nervous, as anyone would be doing something big like this. When I first arrived and the first full day at camp, it was a real challenge for me as I was really missing home and my family, I just really wanted to go home.

One of the Very Special Kids leaders, Anna, could see I was struggling, we chatted about how I was feeling and she stuck by my side and helped me push through my fears and the challenges I faced.

With the help of Anna and knowing I had someone to talk to and someone there if I needed help, I was able to look on the positive side and really enjoy my time and the camp experience and I got to know some of the kids on the camp and the Mittagundi camp staff.”

“So for anyone thinking of going or doesn’t know if they should go or not, it’s a once in a lifetime opportunity that you may not be able to get the chance again.

Even if you’re nervous or scared just say yes and do it because it’s something new to try and you get to meet new people experiencing or have experienced similar things as you, plus you’ll have so much fun!” 

Liv also expressed her gratitude to Newsboys Foundation for funding the camp experience for her and the other siblings who attended.

Newsboys Foundation’s valuable contribution helped siblings build their self-esteem and connect with other young people over fun, adventurous and therapeutic activities.

“Alfie has cerebral palsy at the severe end of the spectrum.

 

But I think Alfie’s not just those things: she’s also a three-year-old kid who is incredibly joyful. She loves being the centre of attention. She’s funny. She loves painting, she loves drawing, she loves smells, she loves her brother and sister, and she’s super determined.

 

She wouldn’t be here if she wasn’t.”

Alfie’s family started receiving support from Very Special Kids in 2022 and describes the introduction as a pivotal moment that changed their lives for the better.

Not only does Very Special Kids House offer Alfie a safe and supportive environment to have fun, but it also means Tim and his wife Kristiarne have the opportunity to recharge and spend quality time with Alfie’s siblings.

While Alfie’s future remains uncertain, Tim and Kristiarne are endlessly grateful for the gift their daughter has brought to their lives.

“Alfie has changed our lives for the better, and institutions like Very Special Kids have made the journey, initially bearable and now ultimately rewarding and enriching.”

Initially, doctors thought Ted had suffered a brain injury. It was an agonising process for his son to be diagnosed with PDC, as it was very rare in someone so young. He and his wife, Michelle, were emotionally exhausted and unsure what the future would hold for their baby boy.

Ted began a specialised treatment plan and at nearly two months old, was moved to The Royal Children’s Hospital, where Antony and Michelle were first introduced to Very Special Kids.

Having a brand-new baby can be a daunting, exhausting and confusing time, let alone when that child is very sick. When Antony needed a moment to breathe, an escape from seeing his son connected to tubes, he knew his dedicated family support practitioner at Very Special Kids was only a phone call away.

“The knowledge and the genuine empathy that comes with the people at Very Special Kids, knowing what you’re going through, makes the difference; it just makes it relatable and more sincere and genuine.”

While Ted did eventually go home, his condition sadly began to deteriorate after his first birthday.

“Through Ted’s life we had a number of occasions to call an ambulance or rush trips to hospital due to seizure activity that we couldn’t bring under control with his medication,” Antony says.

“Around his first birthday, we weren’t really sure what it was, but it appeared to us like he’d had a stroke. And it turns out he’d had a metabolic stroke.”

After the metabolic stroke, Ted wasn’t the same. He lost muscle tone in his face and down the right side of his body.

“And in those final days, the last seizure, we knew he wasn’t coming out of hospital.”

Ted sadly died at 14 months of age in July 2022. Very Special Kids has remained by their side every step of the way.

Sadly, Antony is one of many parents who have experienced the death of their child. When asked what his advice would be to families who might be going through a similar experience, he shares that grief doesn’t have a timeline, nor will it feel the same for everyone.

“Whatever emotion you are feeling as you go through that, it’s valid, it’s not wrong to feel like that,” he explains.

“You’re in a very small group of people that go through these sorts of things and there’s no right or wrong way to feel during it. So whatever emotion you’re feeling, it’s not wrong.”

Hosted by Lord Somers Camp and Power House, this weekend away offers Very Special Kids families a much-needed opportunity for fun and relaxation by the sea. The camp makes fun accessible to everyone and is a place where kids of all abilities can choose their own adventure, while parents rest and recharge.

This was a turning point for a family who had already been through so much, a ray of light through dark clouds. The relief they desperately needed to make daily life just that little bit easier to manage.

I know you’ll agree that having a child with a life-limiting illness would be unbelievably tough. But for regional families like Marley’s, life can be even tougher.

This is why Very Special Kids offers regional and rural support services.

Whether in Malvern or the Mallee, Nurmurkah or Nunawading, every child with a life-limiting condition is precious and deserves the best quality of life.

Currently, nearly 800 families across Victoria are accessing our support services, but this work can only continue with the support from our very special community. You can be a ray of light for children like Marley and their families.

We can only keep up our specialist care for every family like Marley’s with your help.

Please make a donation today to help bring light, laughter and rainbows to families like Marley’s.