One in a million

At just 26, Jonathan was bursting with energy and ambition. With three degrees and a dream career taking off, he stood on the edge of a brilliant future. Newly engaged, every path ahead sparkled with possibility.

No one could have imagined that, in the midst of so much promise, Jonathan’s world was about to be shaken by a devastating diagnosis.

Doctors thought it might be a slipped disc, a common sporting injury. But when the scans came back, something didn’t look right. More tests followed. Then biopsies. Then consultations with pathologists and oncologists. Weeks turned into months of uncertainty.

Finally, Jonathan heard the words no one expects at age 26:
Stage four rare vascular sarcoma. One in a million.

Most people think a cancer diagnosis comes with a plan – surgery, chemotherapy, radiation or immunotherapy. But Jonathan’s cancer was so rare, there was nothing doctors could offer.

“I remember the oncologist making sure she had my attention. She said: ‘Because it’s so rare, there just isn’t a treatment available to you.’ I was 26 years old and told there was no treatment for me.”

The news was devastating. Jonathan had just started his adult life and suddenly it felt like it was already over.

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The diagnosis shattered his engagement, changed friendships, and forced Jonathan to reimagine his future. Yet in the face of so much loss, he refused to give up hope.

He built new friendships. He travelled. And then he met Nicki – the very special woman who would become his wife and the mother of his two daughters.

“When I’m with my family, I try to be fully present. Nicki reminds me that life is lived in the moment, not in the shadow of cancer.”

Together, they created a home filled with music, dancing, road trips and Saturday night movies. Jonathan’s daughters are now 10 and 8.

Against all odds, he has lived with his cancer for more than 15 years.

But every day is lived with uncertainty. The cancer hasn’t gone away, and it still shadows his future.

His wife Nicki says one of the hardest things is not knowing what the future looks like for their family.

“Dreams of retirement, of travel, of the life we thought we’d have – sometimes I feel I can’t let myself dream them the same way anymore.”

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Jonathan could have chosen to focus only on surviving. Instead, he chose to give back – not just for himself, but for every person facing rare cancers.

“When doctors told me there was nothing they could do, I realised the only key to hope is medical research.”

Jonathan co-founded a global patient support network that now connects over 2000 people from 80 countries. He built a foundation dedicated to funding research and supporting others with his ultra-rare cancer.

He also works closely with world-leading scientists, like Professor Clare Scott AM at WEHI, ensuring the voices of patients guide the future of cancer research.

Nicki says that seeing their dad turn his diagnosis into action is an incredible lesson for their daughters.

“He shows them that you can create change, even in the face of cancer.”

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Individually, rare cancers are just that – rare. But together, they make up almost one-third of all cancer diagnoses. Yet research funding and treatments overwhelmingly focus on the top 10 most common cancers.

That means hundreds of cancers – like Jonathan’s – are left with few treatments, limited clinical trials, and little hope without research.

“We can’t leave rare cancer patients behind. The breakthroughs we discover in rare cancers often lead to treatments for the more common ones. By helping people with rare cancers, we help everyone.” – Jonathan.

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