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Beatrice’s place of sunshine
October 9, 2026
Thirty years ago, the doors to Very Special Kids House, Australia’s first children’s hospice, opened and set a new benchmark for paediatric palliative care in Australia. In the decades since, generations of Victorian children and families have made priceless memories at the hospice at Very Special Kids House.
For eight-year-old Beatrice, every stay brings something new to look forward to.
Below, her mum Bronwyn shares what happens within these walls and why it has become such a special place for their family:
When people hear the word hospice, they often imagine sadness. Before Very Special Kids, I probably did too.
But for my daughter Beatrice, Very Special Kids is not a sad place.
It is her place of sunshine. It is joy, music, bubble baths, art, adventures, Malvern shopping trips and lazy rivers.
Dropping Beatrice off at Very Special Kids feels less like taking my child to a hospice and more like being the taxi driver for a star.
The doors open and everyone calls out, “Beatrice!” like a celebrity arriving on a red carpet.
The nurses, personal care workers, cook and allied health therapists all know her. They know what she likes. They know what makes her laugh. They know when she is being cheeky. They know how to make her feel safe, cared for, powerful and important.
And for an eight-year-old whose life can be very hard, that means everything.
Beatrice has infant-onset FSHD muscular dystrophy. It is progressive, rare and cruel. Two years ago, she could still walk. One year ago, she was using a walker. Now she cannot stand or weight bear at all. She uses a wheelchair full-time. She understands that her muscles are deteriorating. She knows that things are changing.
As her mother, it is heartbreaking to watch your child lose abilities while still trying to be a child.
Our everyday life is full of appointments. Specialists. Therapies. Equipment trials. Medical reviews. Funding paperwork. Sometimes there are two appointments in one day. There is always something to organise, chase, explain, justify or prepare for.
It can feel like our whole life is built around what Beatrice’s body needs.
But Very Special Kids gives her something different.
At Very Special Kids, Beatrice is not just a child with a life-limiting condition. She is Beatrice. She is funny. She is glamorous. She is bossy. She is dramatic. She is social.
She is the girl who wants bubble baths every day of her stay. She is the girl who chants “VSK! VSK!” at the calendar when she sees a stay coming up. She is the girl who comes home with presents, artwork, stories and very strong opinions about needing extra nights.
And that is what I love most about Very Special Kids. There is this beautiful, joyful, determined attitude of giving children the best possible life. A loving “why not?” approach.
Why shouldn’t a child in a wheelchair go to the shops and live large?
Why shouldn’t she get her nails done?
Why shouldn’t she sing Britney Spears into a professional microphone with the music therapist?
Why shouldn’t she be in the lazy river at Gumbuya World having the time of her life?
That is the magic of Very Special Kids. They do not just care for Beatrice’s medical needs. They care for her childhood.
They make sure she has stories to tell. They make sure she has adventures. They make sure she has choice, fun and dignity. They make sure that in a life filled with things she cannot control, she still gets moments where she is completely in charge.
And she loves being in charge.
One of my favourite memories is Beatrice checking that the senior leaders at Very Special Kids were all on track for a family fun day with Santa. She was very clear that everyone had jobs to do. She was basically running the place.
Another is her singing with the music therapist, microphone in hand, absolutely living her best pop star life.
When I collect her I’m met with hugs — followed very quickly by the look that says, “What are you doing here?” Sometimes it takes us an hour to leave because she is trying to tell us about every last activity, every person she saw, every thing she made, every moment she does not want to end.
For Beatrice, leaving Very Special Kids is often the hardest part.
For me, leaving her there is one of the easiest hard things I do.
It is hard because she is my child. It is hard because the reason she is eligible for Very Special Kids is not something any parent wants. It is hard because trusting other people with your medically complex child is enormous.
But it is also easy because I know she is safe.
I know she is loved.
I know she is seen.
I know she is not just being looked after — she is being celebrated.
Very Special Kids is the first place where I have felt like we truly belong. Not as a family that is “too complex”. Not as a parent who has to explain every detail. Not as a child who is difficult to include. But as us.
They understand the practical reality of our life, but they also understand the emotional weight of it. They know that respite is not just a break. It is oxygen.
When Beatrice is at Very Special Kids, I can breathe. I can sleep. I can stop holding everything for a little while. I can know that she is not missing out because I am resting. In fact, she is probably having more fun than she has all week.
That is an extraordinary gift.
Very Special Kids has also helped Beatrice with the harder parts of her journey. Through the support of the child life therapist, she has been able to work through some of her fears around medical treatments — treatments that are necessary, but still frightening. They help her make sense of things. They give her tools. They give her confidence. They support the whole child, not just the diagnosis. For a child like Beatrice, that matters deeply.
Her life is not easy. It is not fair. There is grief in watching her body change. There is grief in seeing her understand that change. There is grief in knowing that her childhood includes conversations, treatments and limitations that no child should have to face.
But there is also joy.
So much joy.
And Very Special Kids protects that joy.
They create it. They chase it. They make space for it. They say yes to it.
They give children like Beatrice the chance to have the biggest, brightest, most beautiful experiences possible. They give families like ours the chance to rest, recover and keep going. They give us a place where the hardest parts of life can sit alongside laughter, music and glitter.
To other people, Very Special Kids may be Victoria’s only children’s hospice. To Beatrice, it is her place.
To me, it is the first place that made me feel like we were not alone.
And when your child’s life is hard, when every day asks so much of them, when the future is uncertain and the appointments never stop, a place of sunshine is not a luxury. It is everything.
– Very special mum, Bronwyn
Thank you to Bronwyn for sharing this beautiful reflection for World Hospice and Palliative Care Day.
Beatrice’s story offers a glimpse into the many ways hospice care can help children and families navigate childhood illness.
For families like theirs, Very Special Kids House is more than bricks and mortar. It is a place where childhood can exist alongside complex health needs.
