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The long way to home: Sophia’s story
November 7, 2025
When Sophia was born in April 2024, excited first-time parents Zoe and Ken could never have imagined that the first year of her life would be spent mainly in hospital.
They didn’t expect more questions than answers. Or that Sophia would need round-the-clock respiratory support and a tracheostomy at just four months old. And they never imagined that the day after Sophia’s surgery, Zoe would begin chemotherapy for triple-negative breast cancer.
“On the worst days of chemo, I used to FaceTime her,” Zoe recalled. “I could only hold my phone for about five minutes before I had to hang up. I didn’t even know if she knew I was her mum.”
Now home, with Sophia in their arms and Zoe in remission, the couple are taking a moment to breathe. Their bright, cheeky one-year-old, beams at her music therapist, waves at everyone and even plays the piano with her toes.
But getting here wasn’t easy, and the road ahead is still filled with uncertainty.
A series of unknowns
After bringing newborn Sophia home, Zoe and Ken’s concerns began.
“Our gut was screaming that something was wrong,” Zoe remembered. “She was trying to cry with all her might, but no sound was coming out. She was really slow at feeding, her colour was dusky and she was really sleepy.”
As Sophia’s condition worsened, Zoe and Ken rushed their baby girl to the emergency department. “I remember thinking she’s not going to make it through to the morning,” Ken recalled.
The next day, Sophia was transferred to Monash NICU, where she would spend much of the next 10 months.
For a long time, there were no answers, just a mix of emotions and fear. Eventually, genetic testing revealed Sophia had a group of rare hereditary conditions called congenital myasthenic syndromes (CMS), which affects neuromuscular function.
“It felt like we could finally name the monster that was plaguing our family,” said Ken.
For Zoe and Ken, limited research and the many variations of CMS mean that much about Sophia’s future remains uncertain.
Just weeks later, the family faced another devastating blow – Zoe was diagnosed with breast cancer. Her treatment began immediately, overlapping with Sophia’s complex care, hospital transfers and a tracheostomy to help her breathe.
A transition into something like normal
After months in hospital, the family faced a confronting reality: going home meant becoming full-time medical carers overnight.
That’s when Very Special Kids came into their lives and offered a solution – an emergency respite stay in family accommodation at the hospice.
Zoe, Ken and Sophia stayed here for five weeks. During that time, staff helped train specialised carers to support them and coached the couple on medical routines such as suctioning, feeding and how to care for Sophia’s complex medical needs at home.
More importantly, the family began to discover everyday joys.
Sophia went on a swing for the first time. She felt the wind in her hair, played music with Isaac, the music therapist, and painted her first picture.
“She cried when the wind touched her face – she wasn’t used to it,” said Zoe. “It was like she’d been institutionalised.”
Alongside these joyful firsts, Zoe and Ken had space to recover and rest. “It was like a real-life simulation. Very Special Kids helped us figure out what life was going to look like.”
A place where Sophia belongs
Now, the family regularly accesses respite care at Very Special Kids House – and while it’s a break for Zoe and Ken, it’s also an experience that Sophia loves.
“She’s older now, more social,” said Zoe. “She loves Play-Doh, going to the duck pond, music sessions and nail painting. The staff know what makes her happy. The more the nurses get to know her, the more comfortable we get leaving her here”.
Ken added, “It makes it a lot easier for us to trust Very Special Kids. We’ve got that confidence that when we drive off, they can handle a situation.”
The family now trusts the team like an extended family.
“We know she’s going to have fun, that she’ll be looked after by people who genuinely care for her,” said Ken.
Looking forward
Life at home is still complex. Sophia requires 24/7 care, equipment and trained carers day and night. Her day is filled with therapy, hospital appointments and routines that most families never need to consider. But it’s their family life – and it’s filled with love.
“Everything’s taught me a lot of perspective,” said Zoe. “It’s been really hard, but we’re lucky because we’re together and we can support each other”.
Recently, Very Special Kids gave them the confidence to do something they hadn’t done in a long time: go to a wedding and enjoy a dinner out with friends. “Stuff like that just makes you feel a bit more human,” Zoe reflected.
Zoe said it’s hard to put into words what the understanding and care has meant. “We didn’t know about Very Special Kids before this, but now I’d shout it from the rooftops.”
You can help us care for kids like Sophia by supporting the Piggy Bank Appeal during November.
Get involved by:
- Buying a very special piggy bank to help save your coins. Visit our online shop here or visit your local Commonwealth Bank branch
- Enjoying a meal out with friends and family. ALH Hotels will be donating $1 from every garlic bread sold during November – click here for participating venues
- Donate to help fill our piggy banks here.
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Kara’s story
October 28, 2025
Kara was a bright, loving little girl whose early days were filled with joy and play alongside her family and their menagerie of pets brimming with guinea pigs, chickens, cat and dog. She adored Bananas in Pyjamas, jewellery and dressing up.
In February 1993 the family relocated from Ballarat to Melbourne. With relatives spread across Australia, parents Susan and Peter worked hard to settle their three children – Kara, one; Scott, three; and David, four – into their new city.
Then, at the young age of 18 months old everything changed for the young family of five.
Noticing Kara’s constant lethargy, Susan asked, “Kara, do you want to go and see a doctor?” Kara nodded. Tests revealed severe anemia – only half her normal blood count.
On 1 September 1993 came the devastating diagnosis: neuroblastoma, stage three, with a tumor ‘the size of a football.’
“I was crying on and off. I couldn’t talk to people without crying,” Susan recalled. What stayed with Susan most was Kara’s extraordinary strength. “She just had this amazing acceptance of what was happening. And she inspires me even today.”
Kara was always calm, never resisting or complaining during regular, painful tests.
A small stuffed pink pig, Ms. Piggy, became her comfort during difficult treatments, which Susan still holds onto.
“Whenever she was in the pusher or going to hospital or having injections or anything, Ms. Piggy was always there.”
“It’s the most horrible feeling to know that you can’t control what’s happening to your child,” Susan recalled.
Life became a balancing act. Susan was breastfeeding, caring for Kara in hospital, and still nurturing her two young boys.
“You feel very alone trying to cope with this incredible task of looking after two small boys. It’s the most awful feeling to know you can’t be everywhere.”
Kara endured challenging treatments – autologous bone marrow chemotherapy, surgery, time on a ventilator – all without a voice or choice in her care. Susan and Peter felt horrified, navigating a situation beyond their control.
For five months, Susan rarely left the hospital. So, support from Very Special Kids volunteers became a lifeline. Jenny, Murielle, Joan and Nancy offered extraordinary care.
Jenny visited twice a week for four hours, giving Susan precious breaks at home and an empathetic shoulder to lean on, “she was so caring and kind. She listened, didn’t judge me, and really advised me.”
The care, thoughtfulness and consistency of these strangers made all the difference. Knowing Kara had one-on-one attention while constantly tethered to machines brought Susan peace.
“Very Special Kids was amazing,” she recalled. “It’s the people who you don’t expect to help you that come forward.
They lift you.”
Sister Margaret Noone’s visits also left a mark on Susan. “She’d always come and talk to me. And just acknowledging you is a big thing.”
When Susan looks back to that time, Very Special Kids were always there. Creating unforgettable moments of joy for her and her family. Christmas parties, outings and events – small breaks in the storm.
“They’re the fun times we remember rather than the difficult times. But if we hadn’t had Very Special Kids give us those fun times, we wouldn’t have had anything extra.”
When Kara died, aged three years and nine months, she was at home, surrounded by love. That night she was in pain and struggled to breathe. Peter wanted to get help. Susan gently told him, “We don’t need to get help. Kara is dying, darling.”
“Even though the child dies, your loss doesn’t stop. It’s a whole lifetime,” Susan reflected. “We live with that knowing that we’ve got that little gap in the family and nothing you can do about it.”
In Kara’s honour, Very Special Kids volunteer Jenny wrote a moving poem, which Susan still treasures on her wall:
As I write the tears of love that gently trickle down,
I think only of you and the peace that you have found.
Here’s to the love and laughter that you have brought my way.
Here’s to the special memories that are here to stay.
Here’s to all the happiness that filled our days together.
Here’s to all the special love that will stay in my heart forever.
And I know I will always be happy as can be,
that the world’s most precious fairy chose to give her love to me.
Still, Susan remains grateful for the care extended beyond Kara’s death. “Very Special Kids would have to be one of my high notes,” she said. “Even when she died, we still got the care. That was the thing. We still got the care.”
As Very Special Kids marks 40 years of support, Kara’s story is a testament to the compassion that sustains families through the hardest journeys – and to the kind, fun-loving, adventuresome person she would’ve been if she was alive today.
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Skye’s story
September 5, 2025
Born with a very rare genetic condition called Sanfilippo Syndrome, Skye is one of less than 100 children with the disease in Australia.
As a degenerative disorder, over the years Skye has lost the ability to speak, and is slowly losing mobility amongst other cognitive issues.
For dad Mark, looking back at videos of Skye can be heartbreaking.
“Day in, day out, we don’t notice always the regression,” he says. “Someone showed me a video of her when she was probably about five years old, and she was serving me a plate of food.
“She was cracking pepper on that plate and she was talking a bit in the process. There is no way she could do that now.”
Mark describes the condition as similar to dementia. Receiving the diagnosis was extremely difficult.
“Obviously you think about the future watching them play sport, and all those sorts of things are now gone,” he says. “You go through that grieving process.”
At the same time, Skye’s mum Wanna suddenly lost her hearing which added to the pressure on the family.
Now ten years on from Skye’s diagnosis, and the family has been able to settle into a new normal.
“Once we were able to gather ourselves, we developed a strategy for her that was very, very simple,” Mark says. “Any decision we made for Skye was based through the lens of love, happiness, and the best quality of life that we could deliver.”
That’s where Very Special Kids has been crucial. Since 2016, the family regularly stay at the hospice at Very Special Kids House for respite and have created many lasting happy memories.
Living two hours from Melbourne in Ballarat, a trip to Very Special Kids House includes 24-hour medical care for Skye in a home-like setting while the family can stay in the family accommodation on site.
Those supports are integral to coping with life, Mark says.
We can happily leave Skye with the hospice staff knowing she’s going to have a ball.
Skye is particularly fond of the sensory activities and toys on offer.
The family has also made use of the holiday accommodation at Glen Osmond Farm in Woodend. An oasis packed with all the accessibility features needed that might prevent families from being able to travel.
“Initially, I think we underestimated the toll looking after a special needs kid takes,” Mark admits. “You never switch off. You never fully shut down.”
“Just being able to have that time just to recharge, so we can be at the top of our game to be able to look after her is so important, for us and for Skye.”
It’s been particularly useful for their teenage son Luke, who has been able to catch up with friends in Melbourne and get quality time with his parents that might not have been possible without respite assistance.
“Our son has to make quite a lot of sacrifices,” Mark says. “It plays that part in us being able to invest some time in him.”
Very Special Kids also has a dedicated sibling support program to connect others in similar situations.
Family wellbeing is paramount for Very Special Kids, Mark says.
Very Special Kids gives you that opportunity just to recharge your batteries but also know that we know Skye’s having fun.
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A Father’s Day reflection
Written by Nigel, bereaved dad of 17-year-old Olivia who had FOXG1 syndrome and cerebral palsy
August 29, 2025
Father’s Day is often a time for celebration, but for me it has become a day of reflection – looking back on the precious time spent with my daughter Olivia and the incredible support we received from Very Special Kids.
When Olivia entered palliative care, life was turned upside down.
As a father, I wanted to protect her, provide for her and give her a sense of comfort and safety – but the situation was completely new and nothing could have prepared me for it.
Very Special Kids gave me the tools to continue being her dad, even in the most heartbreaking of circumstances. The hospice gave me structure and routine, something steady to hold on to when everything else felt uncertain.
One of the most precious gifts we were given was time in the Very Special Kids’ swimming pool. It may seem like a small thing, but for us, it was everything. In that warm, quiet space, we were able to hold Olivia, play, laugh, and just be together – as a whole family.
For a small amount of time our family was happy and smiling. It was a special time that we would have never have had elsewhere.
The onsite houses allowed me to stay close enough to Olivia to never feel distant, but also gave me the space I needed when emotions became overwhelming.
That balance of closeness and space was something we didn’t know we needed until we had it.
When Olivia passed, the Butterfly Room (also known as the Balam Balam suite) offered me and my family a place of peace.
Family and friends gathered there to spend time with Olivia, to say goodbye and to reflect.
As her father, it gave me the chance to stay close to her, to sit with her and to honour her life with the dignity and love she deserved.
Very Special Kids gave me more than just support during Olivia’s journey – they gave me the chance to still be a father in the truest sense.
They made sure that Olivia’s final months were not just about illness, but about comfort, love and togetherness.
And for me, they gave the strength to keep showing up as her dad, even in the hardest moments.
This Father’s Day, I will carry both the pain of loss and the gratitude of having had that time with her.
Without Very Special Kids, I don’t know how we would have survived those 15 months. They made it possible for me to keep being Olivia’s dad, and a father for the rest of the family – something I will treasure forever.
Olivia 28/4/06 – 19/3/24
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Henry’s story
August 27, 2025
Henry was the kind of kid who made friends without saying a word. He had a quiet charm that drew people in — from nurses to classmates and even strangers.
“He only ever made a friend,” his mum Jess says. “It was just so cool to watch.”
Born in Shepparton in 2007, Henry lived with complex medical needs from infancy. He had cerebral palsy, epilepsy, severe respiratory issues and was visually impaired. But Jess is quick to point out that Henry was never defined by his diagnoses.
He brought extraordinary people into our world and made us better people.
I don’t know who I’d be if he hadn’t entered my life.
Henry’s care often meant long hospital stays in Melbourne, away from his siblings and dad, Paul. Jess recalls the whirlwind of specialists, medications, and emergency flights.
“Behind the scenes, there was so much more going on than people realised, but we just did what needed to be done.”
It was during one of those hospital stays that Jess first heard about Very Special Kids. A fellow parent mentioned the organisation, and soon Jess was connected with Jenni, a Shepparton based family support practitioner.
“We couldn’t believe it when she told us all the services that were available,” Jess says.
“There was a level of excitement that there was actually a service out there for the whole family.”
Holistic care now and beyond
Very Special Kids became a constant presence — offering respite, emotional support and connection for the family of five. “They’re the only ones who do the after,” Jess says. “When your child dies, everyone else steps away. But Very Special Kids stay.”
Henry sadly died in 2013. In the years since, Jess has found many ways to honour Henry’s legacy through creativity and advocacy.
In 2010, she founded Made By You, inspired by her time with Henry in hospital. “I saw how important it was for kids to experience joy beyond their illness,” she says. “To express the essence of who they are.”
Made By You is a vibrant art-centred project that gives children with life-limiting conditions the chance to design their own t-shirt — a reflection of their personality, not their diagnosis. “The dream was that someone would ask, ‘Is that made by you?’” Jess says. “And the child could say, ‘Yes,’ with pride.”
Jess has kindly dedicated time to craft unique t-shirt creations at our sibling days, hospice and family events.
“Some kids are so particular with their designs. You can see they’ve poured their heart into it,” she says.
“And when they put the shirt on, it’s magic.”
Jess also recently facilitated a palliative care education symposium in regional Victoria, bringing together organisations and professionals to raise awareness.
“There’s a real gap in understanding paediatric palliative care, especially in regional areas,” she says. “I want families to know what’s out there — to feel supported, not alone.”
Looking back, Jess says Henry’s life continues to ripple outward. “He made me who I am,” she says. “And now I just want to give back.”
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Jack’s story
August 22, 2025
Jack first came through the doors of Very Special Kids House as a toddler, nestled in the arms of a family navigating the early days of a life-changing condition.
“We were told that he would never walk and that he was unlikely to survive past the age of two,” his mum Lisa shares. “It was a devastating diagnosis.”
Born in 1999, Jack was diagnosed with a degenerative neuromuscular disease called Spinal Muscular Atrophy Type 2.
At the time, I could not see a way forward with anything. It was very dark and very bleak.
That’s when Lisa made the decision to reach out to Very Special Kids.
“I remember the day that I found the courage to pick up the phone and ask for help. The voice on the end of that phone was so compassionate, kind and helpful.”
For close to two decades, Jack became a familiar and much-loved presence at Very Special Kids House – with more than 60 admissions for respite care.
For Jack, this was a sanctuary, a second home filled with adventure. For his family, these stays offered ‘life-bringing’ respite.
Lisa reflects, “Very Special Kids wrapped around our entire family and supported us to live a life that was hopeful, joyful, and always supported.”
One of the most enduring relationships Jack formed during his time at Very Special Kids House was with Margaret, a volunteer whose bond with him continues to this day.
When Jack and Margaret were together, the four walls of the hospice expanded into a world of exploration. They could spend hours touring the streets of Google Maps visiting cities, carparks and faraway places.
“Jack gave me joy,” shares Margaret. “He brought out my inner child. He’s intuitive, funny, and has this innate politeness that makes everyone feel seen and valued.”
Recently, Jack returned to the hospice to see the newly rebuilt facility.
Now 26 years old, he toured the space with keen interest, asking thoughtful questions about how things work and what’s changed.
While some familiar faces greeted him, many were new. Yet Jack, always found a way to dive deep into conversation.
Margaret watched with quiet pride as Jack toured the space. “He’s not the young boy or teenager I once knew,” she reflected. “He’s got his own inner strength and picks up on subtleties in some ways that other people don’t.”
Jack’s visit was more than just a walk down memory lane — it was a reminder of the many different stories that emerge from Very Special Kids.
Each family’s experience is unique. For some, like Jack’s, the journey continues beyond these hospice doors. Ageing out of the service can be daunting, and the unknown that follows can sometimes feel overwhelming.
Lisa shares, “It left a significant gap in our world and I still get emotional when I think about the last day at the house and all of those goodbyes…There’s nothing quite like it out there.”
Today, Jack lives with independence in a supported facility, continuing to explore the world around him with the same curiosity and joy that defined his childhood
Lisa’s connection with Very Special Kids also continues, now serving on the board to help shape the future of the organisation that supported her family for nearly two decades.
My intention as a board director is that I can contribute positively to the future of Very Special Kids and ensure that others that now unfortunately will come after us, that they get the same sort of support and hope that my family did.
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Chris’ story
August 18, 2025
Leah wasn’t sure when the dreams began — perhaps the fourth or fifth month of pregnancy — but they came often and left her unsettled.
“I just knew something wasn’t right,” she said. “I kept asking for more tests, but they told me everything looked normal.”
When her son Christopher was born in 1985, Leah felt a wave of relief. “He was angelic, with little, round cheeks, a perfect face, and I thought thank god, the dream was wrong.”
Before Leah knew it , her world shifted.
Christopher was struggling to breathe, and doctors soon discovered he had been born without a chest wall. On his left side the ribcage was missing and whilst his left lung was intact and functioning, the right lung was cystic. He also had a severely curved spine that was compressing his organs.
With no known cases or medical references, the team faced only unanswerable questions about her baby’s future.
“I was devastated. My world had come completely apart, so I just sat beside him. I didn’t move, I just held his tiny finger, and I prayed.”
“I said “Chrissy, I’ve just got to know you, I’ve got a whole world to show you, we’ve got to spend a lifetime together. You can’t, you can’t give up! We’re going to fight this together.”
I felt this tiny pressure on my hand, like Chrissy was squeezing my finger.
His eyes opened, his little head turned to me, then he closed his eyes again. And I knew right then and there, ‘We’re going to do this, he’s going to live, we’re going to fight!’”
Chris spent months in hospital, undergoing surgeries to protect his lung and manage his condition. Leah stayed by his side, day and night, “Our life was day-to-day. There was no organising, no planning, no preparing.”
As Chris grew, he developed a cheeky and engaging personality, his frequent hospital stays meant Leah often had to leave her younger son Jamie in the care of friends and family.
Financially, times were tough. Leah was a newly single mother and outside her father Frank, she had little emotional or practical support.
Her dad was a constant presence — visiting the hospital and making sure Leah was cared for too. Then, when Frank was unexpectedly diagnosed with cancer, their world was upended again. “Apart from a few close friends and family, he was all the support I had,” Leah said. “Dad had always been there for me.”
A few months later, her father sadly died. His loss left a deep void — not just in Leah’s life, but in the care and comfort she had relied on. With little support left, Leah found herself leaning more heavily on Very Special Kids, an organisation that would become a lifeline.
The volunteers simply came and sat with us and made us feel like human beings. With Very Special Kids we weren’t patients, or problems or statistics. We were just normal people.
With them I could cry. Tell them my deepest fears, that I couldn’t cope, that I didn’t know what to do, that I was scared and they would just listen without judgment.
One of the most transformative experiences for Leah and her boys was attending Lord Somers Camp, a program run by Very Special Kids since 1989.
A bit apprehensive at first, it wasn’t long before Leah realised she was surrounded by other parents who understood, “Everybody here is just like us. For once we can kick back like other parents do…There were dozens of volunteers to look after everything. Christoper, Jamie and I went back to Lord Somers Camp many times after that.”
By July 1996, Christopher’s condition had worsened, each breath a struggle, “I was praying that he was going to get better. I believed we were going to get through this hospital visit just like we had all the times before.
“Chrissy was dying, and I know now that he knew this, but at the time I didn’t want to know…I said to him ‘It’s okay my baby.’ He looked at me, I picked him up and that was his last breath.”
Christopher died on 6 August 1996.
Months later, Leah attended a Remembrance Day service at Very Special Kids House, an annual event to support grieving families – now known as Walk to Remember. During the day, Leah’s family support worker Joan spoke about the wisdom of children nearing the end of life.
Joan spoke of a young boy who knew he wouldn’t be going home from hospital. He was scared of dying, and more than anything, he worried about how his mum and brother would cope without him.
As Joan spoke, Leah realised she was hearing Christopher’s story, and it was at this moment she believed she truly understood what Very Special Kids brings to the lives of families with terminally ill children.
“My son, only days before he died, opened up to Joan. Not to the doctors. Not to the nurses. Not even to me. He opened up to Joan about his fears and his pain and she listened, and she made him feel okay. And that was the biggest blessing of my life.”
It’s more than just one person. It’s the volunteers, the support workers, the camps.
Every person at Very Special Kids are absolute angels. Every one of them has wings, and together they carry us through.
Now, as Very Special Kids celebrates its 40th anniversary, stories like Christopher’s remain at its heart.
Chris was the face of the hospice appeal and shared his story in countless newspapers, becoming a minor celebrity in Victoria.
At the hospice’s official opening in November 1996, Premier Jeff Kennet reflected:
“I cannot help but feel a little sad that Chris isn’t here to see this, to breathe it in and enjoy knowing he had a hand in keeping us on course to deliver.
For kids like Chris there is now a house full of love, full of caring.”
Australia’s first children’s hospice, Very Special Kids House, has since supported thousands more children, just like Chris.
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The different shades of goodbye
August 8, 2025
End-of-life care can look different for every family – plans may shift, expectations may change, and the experience can often be overwhelming. At Very Special Kids, we honour the evolving wishes, needs, and individual dynamics of each child and their family.
Through personalised support, deep listening, and practical partnerships across the state, we help families navigate some of the most emotionally complex and painful experiences during end-of-life, after death and beyond.
Under one roof
When staying close matters most, our onsite family accommodation provides comfort, privacy and emotional sanctuary.
It offers families the choice to retreat, share meals, and welcome extended family and friends – all with the reassurance that our palliative care team is just a few steps away.
Ashley, bereaved mum of newborn Mila who had a rare and fatal neonatal condition shares, “The accommodation allowed us to welcome friends and family when it felt right for us, so they could meet Mila in a calm, light-filled space that felt safe and peaceful.
That privacy and support made a deep and lasting difference in how we were able to process our grief.”
It truly became a beautiful oasis – somewhere we could stay close to Mila, hold her, talk to her, and spend those precious final moments together without feeling rushed or watched.
Easing pain, creating memories
For many families, our hydrotherapy pool is a place of calm during end-of-life care. The sensation of warm water can ease pain, reduce anxiety and allow moments of connection – with siblings and parents often joining in.
Whether used for symptom management or memory-making, these shared experiences often become cherished final moments.
Kelly and Nigel, bereaved parents of 17-year-old Olivia who had cerebral palsy, shares “One of the most precious gifts we were given was time in the Very Special Kids swimming pool. It may seem like a small thing, but for us, it was everything.”
In that warm, quiet space, we were able to hold Olivia, play, laugh, and just be together…For a small amount of time our family was happy and smiling.
It was a special time that we would have never have had elsewhere.
Time to breathe and grieve
After a child dies, the Balam Balam suite offers families a gentle, private space to spend precious time together.
Bathed in soft light, the suite includes a climate-controlled bedroom where families can remain with their child’s body for up to seven nights, allowing time to grieve, reflect, and plan next steps.
Balam Balam is the Woi Wurrung word for butterfly — the language of the Wurundjeri people of the Kulin Nation, on whose land we reside.
I was really truly able just to be with Storme in those last days. I didn’t have to worry about anything else. Food got put under my nose, people came and left.
I was just there just to be able to be beside Storme. And I don’t know another place that would’ve allowed it that way.
Helen, mum of 11-year-old Storme who had neuroblastoma
Returning home
For some families, the wish to return home for their child’s final days is deeply personal. For those living in regional areas, the logistics can make this especially difficult.
One family, newly settled in a remote regional town, was just beginning to build a life in their first home when their child experienced a sudden life-limiting medical crisis. What followed was a whirlwind of hospital appointments, emergency transfers, and a terminal diagnosis – taking them far from home to Very Special Kids House for end-of-life care.
Their child continued to defy expectations, spending eight weeks at the hospice, where staff supported the family to make meaningful memories and cherish time together. Eventually, the mother quietly asked, “Can we take him home?” remembering her son’s words: ‘I love this house, Mummy.’ She shares, “I decided to bring him back to live as a routine family at the end of his life.”
With just days to plan, our team worked closely with 20 health and community partners to make it happen. With the support of Royal Flying Doctor Service Victoria, road and air transport was arranged to safely bring the family 600km back to their hometown.
Their child spent 10 peaceful days at home before his death – a memory they now carry forward.
Leaving Very Special Kids House
Every family’s final farewell is different – some choose to leave quietly and privately, others prefer a more communal goodbye.
For those who wish, we offer a personalised guard of honour: a moving ritual that takes place when a child’s body leaves Very Special Kids House for their final resting place. Staff, family and friends line the entrance to pay their respects.
The farewell may include a favourite song, the child’s face gently visible, siblings walking alongside, or the child being held, resting on a bed, or in a coffin. However the moment unfolds, it is shaped entirely by the family’s wishes.
What stays with me most vividly is watching Gene carry our precious girl in his arms one last time. That image is forever etched in my heart.
Mila’s mum shares, “One of the most unforgettable memories was turning around after handing Mila over and seeing all the staff lined up behind us.
In that moment, we felt an overwhelming wave of support, compassion, and shared grief. It was so beautiful and so heartbreaking all at once.”
Honouring their memory
Some families choose to invite donations instead of flowers at their child’s funeral – a gentle way to continue their child’s legacy and support other families like theirs.
Lucie’s family, for example, requested in-memory donation to Very Special Kids – a quiet, heartfelt way to give back to the community that had supported them.
Kath, bereaved mum of 4-year-old Lucie who had Miller Dieker Lissencephaly Syndrome shared, “We all spent four nights with Lucie at Very Special Kids after she died and we were treated so well. It was extremely sad but also so comforting to be surrounded by such wonderful professionals.”
In a way it helped with our grieving and to have our family and friends close to us during this difficult time at a very comfortable and peaceful place.
When the unimaginable happens, no family should face it alone.
Learn more about how Very Special Kids provides compassionate end-of-life and after death care here.
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100 miles for Jordy
June 18, 2025
In 2023, Dillon made a bold decision to take on a gruelling 100-mile Ultra Marathon in the You Yangs.
This race started as a pipe dream for Dillon, but it quickly evolved into something much more personal when he realised he could honour the memory of his late nephew Jordan – who sadly died at two months old in 2018.
Life quickly became a blur for Dillon and his family, as they supported Kristy and Josh through Jordan’s end of life. Dillon recalls everyone under one roof, sleeping on mattresses for three-weeks as they prepared to say goodbye to his nephew.
“I remember Kristy and Josh were getting a lot of support from a lot of people ‘in the moment’, but as time passed, that dwindled a bit, whereas they’ve always felt supported by Very Special Kids.”
Very Special Kids has stood by the side of Jordan’s family throughout their grief and continues to provide access to expert counselling and a range of support programs, including free-of-charge holiday accommodation at Glen Osmond Farm. Located just outside the township of Woodend, the holiday accommodation offers families like theirs a tranquil place to relax and unwind together.
Five years on and buoyed by the support and encouragement from his partner Maddy and Jordan’s parents, Dillon took to the start line of the 100-mile challenge.
The race would see him running through the night in darkness and subzero temperatures, up mountains and, almost not making it due to hypothermia and dehydration.
“I remember running down a narrow dark corridor surrounded by trees, then my vision started going blurry… My head was spinning and I just lay down on the wet grass, as the temperature dropped to negative degrees.”
With his friend Sean running by his side, and wife Maddy and mum Vicki joining on the sideline for moral support, Dillon kicked back into action to take on the last leg of the race.
He went on to say every single step was agony, his legs were in so much pain but he never doubted he would finish, he had an incredible team behind him and he felt Jordan was there right by his side.
I talk to Jordan a lot when I run on my own. I remember when I started that last leg of the marathon I said out loud, ‘Come on, Jordy, let’s go!‘.
After I’d made it through the race, I knew Jordan was definitely given me a helping hand there.
After initially setting the goal for $500, Dillon was encouraged by family and friends, as well as Very Special Kids, to increase the target to $1500. Within two hours he had reached his target and ended up raising more than $11,000 for Very Special Kids.
“I’ve never fundraised before, so had zero idea of what to expect. It blew me away how many people cared and how many people would reach out to me saying that they drew inspiration from it as well.”
When asked what advice he would give to another fundraiser, Dillon shared, ‘If you’re passionate about the cause that you’re raising the money for, just trust that it is going to a good cause, and you don’t have to feel bad asking people to donate to a worthy cause.”
Would you like to take on a challenge like Dillon in support of Very Special Kids?
Become one of our charity superstars in the upcoming Nike Melbourne Marathon on Sunday 12 October 2025. Click here to apply.
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ABC’s The Conversation Hour: Tae Yoon’s story
May 15, 2025
At Very Special Kids, children’s palliative care extends beyond death, offering families support, comfort and connection after their final goodbye.
During National Palliative Care Week, we had the privilege of exploring the tender, often-unspoken topic of after-death care on ABC’s The Conversation Hour – also acknowledging the moments of light that can be experienced through the darkness.
You can listen to the full conversation here: ABC’s The Conversation Hour, featuring Seol, a very special mum, sharing her deeply personal experience alongside her family support practitioner, Chanelle.
Seol is the mum of 11-year-old Tae Yoon, who had Shwachman–Diamond syndrome. After his death, Seol and her family spent time in our Balam Balam suite, a space designed to give families space to say goodbye in their own way.
“We spent about a week there. It allowed us to be with Tae’s body, to process his death in a way that felt right for us.”
– Seol, mum of 11-year-old Tae Yoon who had Shwachman–Diamond syndrome
For Seol, this experience was profoundly different from the loss of her husband Greg in 2019, when his body was suddenly removed from the hospital, leaving her feeling lost and alone.
I was terrified that the same thing would happen with Tae, but the Balam Balam suite made it a beautiful memory rather than a dark one.
In her moving interview on The Conversation Hour, Seol spoke about the importance of increasing knowledge and death literacy – particularly around after-death care – so more families can find comfort and connection during such heartbreaking times.
Listen to host Richelle Hunt’s heartfelt and open conversation with Seol and her family support practitioner Chanelle here.
