GO BACK
24 hours stepping up for Frankie
May 15, 2026
When Harry steps up to the treadmill on Friday 29 May, he’ll be thinking of his daughter Frankie.
“It’s not really about me, it’s about raising awareness,” he says as he limbers up for the hours long challenge alongside his brother Tom.
Frankie lives with MPS Sanfilippo Type A, a form of rapidly progressing childhood dementia that is life-limiting.
As her condition advances, the four-year-old is expected to gradually lose skills many children take for granted, including the ability to walk, talk, sleep and eat. It is this reality that gives purpose to every step Harry is preparing to take.
“We aren’t renowned as the best runners,” Harry says with a laugh.
Still, the brother duo has taken on the Very Special Kids’ 24-Hour Treadmill Challenge to give back to a charity that has walked alongside Frankie, their family and others facing life-limiting childhood illness.
With the support of his workplace, JLL, Harry and Tom are already in the final stretch towards their ambitious $100,000 goal.
“What really matters is what it makes possible,” Harry says.
“Every dollar we’ve raised so far can make a meaningful difference for families like ours. The support from our community has been hugely motivating, and we hope people continue to get behind it and help us finish strong.”
For her parents, Harry and Bella, Frankie’s diagnosis in September 2025 followed months of unanswered questions.
“Call it a mother’s intuition, but Bella always knew that something was up,” Harry remembers. “Frankie just wasn’t hitting milestones.”
When their second child, Freddy, was born, the gaps became harder to ignore. Bella and Harry attended countless doctor appointments, searching for answers for their little girl.
When the diagnosis finally came, it brought heartbreak, but also clarity.
“It didn’t bring relief,” Harry says.
“But at least it helped us understand what we were facing.”
Soon after, the family was referred to Very Special Kids.
They have since accessed respite care at the purpose-built hospice, where nurses and healthcare professionals provide around-the-clock support.
“It’s fantastic having Very Special Kids as a resource,” Harry says.
“Frankie loves performing or playing with the music instruments in the music therapy space. She also loves her trips down the street with the hospice staff for sushi and icecream treats.”
Support extends beyond medical care. The family also receives specialised counseling that reflects the complexity of living with a child’s life-limiting condition.
“Compared to other counselling services, Very Special Kids has a better understanding of what families are going through. It makes it a lot easier to talk about the feelings of grief I’m going through.”
For Harry, that support is personal. It meets Frankie where she is, and wraps around the whole family, adapting as their needs change and ensuring no one is navigating this alone.
“In my eyes it doesn’t feel like palliative care. It feels like support. It feels like respite.”
After being introduced to Very Special Kids, Harry and his brother Tom were keen to find a way to give back.
“I didn’t realise how much Very Special Kids relies on donations” Harry says. “Seeing how much Frankie enjoys it, I wanted to do something.”
Frankie will be cheering on her dad and uncle during the 24-Hour Treadmill Challenge, giving them that extra push to keep going.
“It’ll be pretty difficult not to hold back emotions,” Harry says. “I hope she’s proud of her uncle and father.”
The 24-Hour Treadmill Challenge is about more than endurance. Across 24 hours, individuals, families, businesses and teams come together, each with their own reason for stepping up, united by a shared goal to support children and young people with life-limiting conditions.
It also opens the door for honest conversations, creating space for people to ask questions and better understand what palliative care means in their own communities.
Very Special Kids aims to raise $1 million through the 24-Hour Treadmill Challenge, ensuring that more families like Frankie’s can access the care and support they need, when they need it most.
From 9am on Friday 29 to 9am on Saturday 30 May, the community will come together to make that possible.
To cheer on and support participants visit vsktreadmill.org.au.
GO BACK
Mila’s story
April 30, 2026
As Mother’s Day approaches, messages celebrating motherhood begin to fill screens, shops and inboxes.
For many, this time of year brings joy and connection. For others, it can carry a different kind of weight that is layered with grief, remembrance and longing.
This is the experience of families like Mila’s.
Mila was born with a rare neonatal condition that meant her life would be heartbreakingly short. Sadly, she died on the day she was born.
After Mila’s death, her parents, Ashley and Gene, stayed at Very Special Kids House. Surrounded by care and support, they were able to spend precious time with their baby and found the comfort they needed to begin to grieve. Ashley shares,
Having a private space for our family at Very Special Kids meant everything during the most heartbreaking time of our lives.
It gave us the dignity to grieve together, in our own time and in our own way, while being close to our baby.
That space allowed Ashley and her family to slow down, to stay present with Mila, and to choose how and when to share those moments with others.
“We welcomed 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.
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.”
Support for the entire family
During this precious time, Mila’s family created meaningful keepsakes through memory‑making activities, including a handprint painting, to honour her life.
Ashley’s older children, Charlotte and Ezra, were also supported during this time, with dedicated spaces and care designed to help them feel safe, comforted and supported.
“Charlotte and Ezra absolutely loved their time at Very Special Kids House.
They connected with the caring staff and enjoyed spending time with the other children. The freedom to move between the different spaces gave them a sense of comfort and control, which was so important during such an uncertain time.
They especially loved the soft play area and the music room. Places where they could just be kids.“
As parents, having our family support practitioner Justine there to support Charlotte and Ezra was incredibly reassuring. She helped them begin to understand and process their emotions, which in turn gave us the space and time to process our own grief.
When it came time to leave Very Special Kids House, Mila’s life was honoured in a way that has stayed deeply with her family.
“The Guard of Honour was an incredibly meaningful and powerful way to say goodbye to Mila. Seeing so many staff members standing silently, taking part in the farewell, was a moment that will stay with us forever.”
What continues to resonate most for Ashley is the respect and care shown to Mila throughout her short life, and beyond.
“It was incredibly meaningful to have the nurses check on her, both during the day and throughout the night. They spoke to her gently, treated her with such respect, and honoured her presence in a way I will never forget.
It made me feel like her life, and even her body after she passed, mattered to them too, not just to me.”
Very Special Kids offers families a range of holistic services, including after death care, at no cost. These supports exist to ensure families are surrounded by dignity, compassion and understanding at the most vulnerable moments of their lives.
As Mother’s Day approaches, it is important that our wider community stay mindful of the many ways this time can be experienced. Bereaved Mother’s Day, held on the first Sunday of May, honours mothers whose children have died and recognises that motherhood, care and love continue long after goodbye.
GO BACK
Storme’s story
February 26, 2026
Storme always drew people in and made them feel part of his world.
An old soul with a cheeky grin, he spoke his mind with fearless honesty and always carried confidence well beyond his years.
Helen first started caring for Storme when he was five years old, and his magnetic personality shone through immediately:
“He was so intelligent, unique and funny…his personality would suck you in, and he just fell into your heart,” she recalls.
“He didn’t care if you were a child, a teacher, a principal, a doctor, a specialist, a surgeon. He just spoke to you. He had no fear and would say it how it was.”
Storme continued to embody these traits, even when life took an unimaginable turn.
It all began with something so ordinary: a runny nose.
What seemed like a minor irritation slowly became something more, leading to months of uncertainty and, eventually, a terrifying diagnosis for nine-year-old Storme.
Esthesioneuroblastoma. A very rare cancer, usually reserved for men in their 60s or 70s.
The severity of his disease didn’t really hit home until palliative care began being discussed.
Very Special Kids made the transition a softer landing, Storme’s mum Helen admits.
“At first it was just a hard no. Then we had another conversation. I didn’t feel like I was being pressured. They just planted a seed,” she said.
After Storme and Helen settled into Very Special Kids House, it quickly became a warm and safe space for them both.
“I used to love when people would visit Storme there. They’d walk in and Storme would say, “Can you sit here and watch me play my PS5?”… They realised it wasn’t sad and depressing and see him having fun and being happy.”
It was a stark change to their hospital memories, particularly when it came to mealtime.
With Storme’s dietary issues, he avoided any hospital meals, which added a lot of pressure on Helen to meal prep for every hospital visit, long or short.
At Very Special Kids, with an in-house cook, it was a huge change.
“Storme would have cravings, sometimes it’d be salty, because with the cancer, it affects your sense of smell and taste and he’d say, “I feel like potato cakes”, she remembers.
“Or they made what they called a cheesy beano. Egg, beans and cheese in a sandwich and Storme would be in the kitchen and love to help.”
In those final weeks of Storme’s life, the hospice quickly became the Ballarat-based families Melbourne home.
“Very Special Kids were probably the most accommodating organisation I dealt with. I was able to sleep in his room with him and have extra space when I needed it to arrange appointments and catch-ups.”
“I knew Storme was being really well looked after and happy and feeling safe,” Helen said.
When it was time to say goodbye, Helen found solace in the care and familiarity of Very Special Kids.
She spent several days in the Balam Balam suite – a private, peaceful space that gave her the time and privacy she needed to be with Storme after his death.
“I have no doubt that was the best for Storme, the environment,” she says.
“I was truly able 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 to be beside Storme. And I don’t know another place that would’ve allowed it that way.”
Looking back, Helen says there’s so much she would share with other families facing the same situation. “I’m a planner, and I thought, ‘Okay, I’d like this, this, and this. This is how I want it to be.’ But when the time came, some things I did differently, and some I didn’t do at all.
“It was good to know these plans were just ideas, and if things changed, that was okay.”
Reflecting on the time since Storme’s death, Helen shared, “I have some really hard days, and it’s really lovely still being able to talk to Very Special Kids…I felt really close, really supported.”
Storme’s memory is never far from Helen’s mind.
“We do a lot of stuff that Storme did,” she says. “He was very competitive and loved playing board games, so we often think about him when we play one now.”
“I’m just really thankful I got the chance to have Storme in my life.”
GO BACK
How you can support families during the holidays
December 16, 2025
The festive season can be an emotionally charged time that brings on mixed feelings of joy, love, nostalgia and stress. For parents and siblings of children with life-limiting conditions – and families who are grieving – this time of year can also be clouded by feelings of grief, isolation and heightened sensitivity.
Whether it’s Christmas, Ramadan, Easter, Diwali, Hanukkah or New Year celebrations, festive occasions can serve as poignant moments of reflection.
While others celebrate, we grieve; while our friends and extended families share joy, we anticipate an impossible loss in our future.
– Anonymous family
At Very Special Kids, we want to ensure all families in our care feel supported during the holiday season. We’ve compiled some helpful tips to show how friends and extended family can be there for their loved ones at this busy time of year:
Ask, don’t assume
Grieving families and those managing a child’s complex health condition have unique needs. It’s important to ask what would make their holiday season easier, instead of making an assumption on their behalf.
For example, while one bereaved family might appreciate having their child’s memory acknowledged at the dinner table, this might be difficult for a sibling who struggles with grief in public. Where possible, enquire in advance or in a private setting. This simple gesture can help ensure you respect boundaries while still showing you care.
Send the invite
An invitation can go a long way, especially for a family who may be feeling isolated from their community. Make it clear that there is no pressure to accept, and that the invitation is extended with understanding that they may need space or be unable to participate.
This gesture can provide a sense of belonging and show that they’re still valued and included, even if they can’t fully engage.
The gift of practical support
The logistical and emotional challenges of the holiday season can often be overwhelming for families who have or have had a child with a life-limiting condition. Be mindful of their ability to participate in events, contribute to meals or engage in gift giving. Offering flexibility in these areas can alleviate a lot of stress.
For example, you might be able to help with meal deliveries, offer to take care of errands or organise a spring cleaning to help the family start the new year fresh. Additionally, if a family has a child with complex health needs, be prepared and accommodating of any last-minute cancellations or changes that are out of their control.
Create inclusive and comfortable environments
Try to make your celebration inclusive for everyone. For example, if a child with complex needs is attending you might need to adjust the environment to accommodate a wheelchair or temperature regulations, have a quiet space the family can retreat to or leave space in the fridge for special dietary requirements.
For bereaved families, it can be helpful to ask how they would appreciate their child being honoured on days like Christmas. This could be as simple as including a special ornament on the tree, a candle on the table or spoken words of acknowledgement during your celebration. Having this foresight can help some families feel more prepared when arriving at a full, noisy home of people.
Thoughtful gift ideas
A gesture like tickets to a family outing, a show or an experience can be a wonderful way to show your support and help families create beautiful lasting memories together.
For bereaved families, it can be a lovely gesture to provide a gift in memory of their child. For example, you might donate a gift that the child may have liked at the age they would be now or make a donation to a charity in their child’s memory.
While the holiday season can be a joyful time for many, it is important to recognise that some may be experiencing different emotions this holiday season. Thoughtful gestures of kindness, understanding and support can make the world of difference.
If you are a Very Special Kids‘ family and need someone to talk to, please reach out to your family support practitioner or call 03 9804 6253 between business hours Monday to Friday (excluding public holidays).
GO BACK
Four ways to spread cheer this Christmas
December 5, 2025
The end of the year can be a challenging time for many families we support. As school finishes and caring responsibilities intensify, we take extra care to support families during this time.
The holiday season brings a lot of joy but also highlights what is missing. For families who celebrate Christmas, it can be a mix of special and sad moments. We’re honoured to support them as they cope with grief and slowly build new memories.
That’s why your involvement matters more than ever. Every act of kindness can help bring comfort and joy in simple, meaningful ways. Here are four ways you can spread cheer this festive season:
Pick the Perfect Tree
Looking for a fresh Christmas tree? Malvern Xmas Trees is once again selling beautiful trees from the front lawn of Very Special Kids, with a percentage of proceeds supporting our work.
Where: 321 Glenferrie Road, Malvern
When: Saturday 29 November to Sunday 21 December (or until sold out)
Hours: 10am to 5pm weekdays, 7am to 5pm Saturdays and 8am to 5pm Sundays
Pop in, choose your tree, and know your purchase is helping families in need this Christmas.
Light up the season
Across our community, incredible supporters are decorating their homes with dazzling Christmas lights – not just to spread festive cheer, but to raise funds for Very Special Kids.
If you know someone who loves going all out (or maybe it’s you!), why not join in? It’s a beautiful way to celebrate the season and make a difference.
The perfect stocking stuffer
Our Christmas Elf and Santa piggy banks are bringing plenty of holiday cheer this month!
For just $15, these festive little piggies make the perfect stocking stuffer or Secret Santa gift –and every purchase helps support children and families in need.
Support families like Emma
This year’s Christmas Appeal shares the story of nine-year-old Emma, who lives with a rare genetic condition that causes cerebral palsy, epilepsy, and affects her hearing and vision.
Though Emma is non-verbal, she has her own way of communicating and expressing who she is, including doing some festive artwork with child life therapist Cassie at Very Special Kids House.
As her mum Ashley explains, Emma speaks with her heart:
“Cuddles are her absolute favourite thing…that tells you so much about her. She shows the world nothing but love, despite everything it’s thrown at her. But she is on borrowed time”
Emma’s mum Ashley appreciates every single Christmas, every photo they get to have with Santa as a family. Because they never know when it may be their last.
Your Christmas gift could help provide Emma’s family the comfort of knowing they won’t have to face the holiday season – and beyond – alone.
Every tree purchased, every light displayed, every donation made helps us provide vital care and support to children with life-limiting conditions and their families.
Thank you to all our supporters who help us make the festive season a bit brighter for families in our care.
GO BACK
A very special family celebration
November 28, 2025
Our end-of-year family day is a highlight for many families in our care.
It offers a chance to wrap up the year with joy and connection, and welcome the festive season in a relaxed, inclusive setting.
This year, more than 300 children, siblings, parents, carers and extended family joined us on the front lawn at Very Special Kids.
We’d like to thank the wonderful generosity of Rapid Relief Team for catering a delicious BBQ lunch, and Good Vibes Society Charity for providing some sweet treats. Thanks also to Wallop Water for keeping everyone hydrated!
Among the many activities families enjoyed, one tradition stood out for its meaning and impact. Capturing a Santa photo or an end-of-year portrait is a cherished tradition for many families – but for those caring for a child with a life-limiting condition, it can sometimes feel out of reach. Busy shopping centres and overwhelming environments often make the experience stressful, if not impossible.
Thanks to the generosity of Heartfelt, who provided three photographers, families at our celebration enjoy professional roaming, Santa photos and portraits in a calm, welcoming space, offering a precious keepsake.
During the day, there was plenty to keep everyone entertained. The Reptile Encounters team kept everyone on their toes, introducing us to some scaly, slimy and furry friends! We also had Animals on the Move there for some more fluffy interactions!
Children lined up for colourful and festive face painting, and families were thrilled to meet their heroes from the Spider-Verse. Adding to the thrill, Melbourne City Wrestlers also delivered an energetic display and were even challenged by some of the kids to a friendly arm-wrestling match!
Another much-loved tradition was also an appearance from vehicles and officers from the Malvern and Windsor Fire Stations, and Malvern Police Station.
Bubble Tonic wowed the crowd with their mesmerising bubble art, magician Lachlan Wilde delighted families and children alike with his magic tricks, while Wild Canary serenaded families throughout the day with their favourite tunes. The Icecream Delights truck was also a big hit, with many smiling faces.
A big thank you to our Youth Advisory Group, who brought creativity and fun to the day with interactive games and unique prizes that kept kids engaged.
Families were also delighted to receive gifts generously donated by our corporate partner, efm Logistics, adding an extra touch of joy to the celebration.
This incredible day wouldn’t have been possible without the dedication of our amazing volunteers. From planning to packing up and all the activities in between, their hard work ensured everything ran smoothly, and we’re so grateful for the care and energy they bring to every event.
We also extend a sincere thank you to our generous suppliers and partners, many of whom donated their time and services to make this celebration truly special. Your support helps create moments that families will remember long after the day ends.
Last but certainly not least, thank you to all the families who joined us and helped make this celebration so memorable. Your laughter, smiles and shared moments are what truly brings this day to life.
GO BACK
A message to bereaved fathers from Ladybird Care Foundation
November 27, 2025
Ladybird Care Foundation are partnering with Very Special Kids to work toward our mission that no bereaved parent walks this journey alone.
The Ladybird Care Peer Mentor Program enables connections and companionship between newly bereaved peers (Peer Mentees) and Peer Mentors (parents more than two years bereaved who have undertaken training to become a Peer Mentor).
If you would like to learn more about the Peer Mentor Program, click here.
We are seeking interest from Very Special Kids’ bereaved fathers, to join an online information session hosted by Ladybird Care Foundation that will bring together the voices of fathers that have experienced the death of their child and the meaningful difference that being part of the Mentoring program has made for them on their grief journey. The session will be held during a weekday lunch hour or late afternoon in mid-February 2026 and will give you the opportunity to ask lots of questions about the program.
To help us plan, please register your interest here. Even if you can’t attend the proposed time, please still register and we will try and accommodate as many of you as we can.
If you have any questions please contact Damienne on dmor@vsk.org.au or 0487 523 155.
About Ladybird Care Foundation
Ladybird Care Foundation was founded by a bereaved father Wayne Pascoe and his core group of friends to honour his daughter Emma.
Not wanting other parents and families to experience their grief journeys alone, they became passionate about finding a way to help others and Ladybird Care Foundation was formed. Read more here.
We are delighted that more than 12 Very Special Kids’ parents have engaged with Ladybird Care Foundation as either Mentors and Mentees and we are already hearing positive stories about the benefits. While many bereaved mothers have engaged with this program, we hope to support just as many fathers to make a connection.
GO BACK
Christmas with Emma and her family
November 24, 2025
Emma’s family holds her extra tight at this time of year, as they don’t know how many more Christmases they will share.
“Here’s Emma with Santa in a photo taken just a couple of weeks ago.
When Emma was first diagnosed, doctors told us she wouldn’t make it to five years old, but this year will be our ninth Christmas with Emma. We are so lucky.
We have a family photo with Santa every year – because it’s a celebration that Emma is still with us.”
– Ashley, Emma’s mum
Many other families just like Emma’s are clinging to every precious moment this Christmas.
Your gift today will help surround families like Emma’s with comfort and support, so they don’t have to face this time of year alone. Donate here today.
Emma’s world is full of all the things most eight-year-old girls love – a Frozen-themed bedroom, Disney movies, the swimming pool and even wrestling games with her older brother Matty, and visits to the local shopping centre to have family portraits done with Santa.
Emma is also non-verbal and requires the support of a wheelchair to get around, she shows joy for her many passions through her contagious happiness and cheeky and loving nature.
What started as routine checks after Emma’s birth quickly turned into a series of diagnoses that turned the young family’s lives upside down.
Even in our darkest hours when everything just seems so dire, you have someone to talk to and be open and honest with how you’re feeling, they make it clear there’s no wrong feelings with what we are going through.
In addition to counselling support, Emma and her family have access to dedicated respite care at Very Special Kids House
The family live in a tight-knit rural community in central Victoria, which has many perks – Emma is well-known and many people go out of their way to make Emma feel special, wanted and part of the community. However, it also means some challenges when accessing specialised medical care.
With the help of the Very Special Kids’ Road to Respite van, Emma can be picked up and dropped off when she stays at Very Special Kids House.
“I love how they have someone sitting in the back with her and they read to her and sing to her and talk to her…It’s nice to know that she’s very well taken care of in the van and even more so at Very Special Kids House.”
Emma’s having a ball
For Ashley and her husband, Brad, the initial respite experience was “nerve-wracking and overwhelming.” Ashley continues, “It’s very daunting leaving just a typical child for a night or two, let alone a special needs child who you’ve done absolutely everything for.”
However, Emma quickly settled in, giving her family the confidence to “let her have her little holiday” because they knew “she’s going to be having an absolute ball.”
“I just watched how Emma took to everything. So we just went in and visited her from time to time to check on her and she barely even noticed us gone which was amazing.”
During her respite visits to Very Special Kids House, Emma’s favourite activities are using the hydrotherapy pool, participating in music and art therapy and sensory activities like finger painting.
Emma’s family love to call Emma every night while she’s at respite and read stories to her to say goodnight.
Ashley shares, “It’s an amazing place, the hospice… that’s why we call it Em’s holiday because these people are there to make sure she’s having a great time 24/7… She gets to make new friends and meet more kids like her.”
Your gift today will help surround families like Emma’s with comfort and support, so they don’t have to face this difficult time of year alone.
I think a lot of people don’t realise that it’s not a bad life. It’s still a beautiful life and she’s still happy. We get this opportunity to spend her life with her. We get this opportunity to love her. Not many people get this. And while it is stressful, it is emotional. It is hard. It is so worthwhile and it is so meaningful and so fulfilling.
There’s no words to describe how thankful we are towards Very Special Kids and what they’ve done for our family.
GO BACK
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.
GO BACK
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.
