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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.
