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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.
