Ryan Bowman was born in 1991 with five congenital heart defects. One in 10 million.
He had four open heart surgeries before his fifth birthday. The last one caused an acquired brain injury. Suddenly a bright, intelligent boy had to relearn how to talk, walk, eat.
His mother, Deb Brooks, spent the next three decades knowing him better than any doctor ever would. She knew which change in his breathing meant something was wrong. She knew his nuances inside out.
Ryan grew up wanting to be a mechanic. He loved Australian rules football. He raised a daughter with Deb’s help, and Deb was a doting grandmother with all the photos and videos to prove it.
He died on February 16, 2025, aged 33.
The care he received in his final weeks was, by any measure, not good enough.
What happened after that is the reason this story exists.
The Partnership Begins
Chris Brooks reconnected with Deb, an old school friend, in late 2022. They’d barely started when Ryan got diagnosed with Hodgkin’s lymphoma on Christmas Eve that year.
Chris made a decision right then: he would carry this load with her.
What followed was more than two years toggling between Cancer House in Adelaide (which Chris still credits as an absolute lifesaver), the Royal Adelaide Hospital, and home. Four air ambulance transfers between Mount Gambier and Adelaide. Road ambulance trips beyond counting.
Deb brought three decades of knowing exactly what Ryan needed. She could read his body like a book. She understood his nuances.
Chris brought something different to the table. Forty years in Australian infrastructure and industrial services. A career built on procurement, tendering, submissions, and getting complex proposals across the line with people who didn’t have to say yes.
Between them, they had what the situation required. The evidence, and the means to make someone act on it.
“If we weren’t asking the questions or pushing the buttons, we’d get nowhere,” Chris says of that period.
They were learning the system from the inside. Where the gaps were. Where escalation paths should have existed but didn’t. Where a family’s written wishes went when nobody was obliged to follow them.
By the time Ryan’s heart specialist, one of Australia’s leading experts, sat them down and said twelve months, Deb and Chris had a working map of the system’s failure points.
They got six.
In Ryan’s final weeks, they couldn’t find local support. They didn’t even know hospice care existed in their region. The end-of-life plan they’d carefully written was completely ignored.
“We treat our pets better,” Chris says.
The Campaign Starts Before the End
Most people stop there. Grief. A complaint. A letter that goes nowhere.
Not Deb and Chris.
Here’s what’s remarkable: the campaign didn’t start after Ryan died. It started while he was still alive.
September 2024. Ryan was still fighting. Deb sat down and wrote a letter to the Health Advisory Council. That was the first major piece of correspondence, and it set the pattern for everything that followed. Not a complaint about what happened. A documented account of where the system had no mechanism for a family to be heard, and what could be done about it.
She wrote to the CEO of the local health network too. They met.
What followed was more than forty pieces of correspondence to state government alone. Ministers. Members of parliament. Department heads. Health network executives. Clinicians. Peak bodies. Each one written to be answered rather than filed. Each one building on the last.
Chris brought four decades of professional habit to it. He’d spent a career learning that complaints don’t move organizations. Evidence moves organizations. Solutions move organizations. A well-constructed submission that makes it easy for a decision maker to say yes—that moves organizations.
So they built one.
Building the Case
The target became clear early. South Australia had no mandated escalation protocol.
Queensland had Ryan’s Rule—a mechanism allowing a patient, family member, or carer to escalate when something’s wrong and they’re not being heard. New South Wales had an equivalent. Western Australia had one.
South Australia didn’t.
Deb and Chris put together the comparative case. They gathered the interstate models. They went to the people who’d implemented them. They met palliative care specialists, clinicians, academics, administrators. They documented every meeting.
They built and maintained a stakeholder register. Chris wrote the submissions. Together they assembled the evidence base into a package that a Chief Medical Officer could read and act on without having to do the work himself.
Deb’s lived experience, three decades of it, was the foundation. Chris’s contribution was turning it into something a health department could actually implement. Neither half would have worked alone.
Alongside the escalation work, they set up the Ryan Bowman Legacy of Care Foundation. Constitution. Governance. Policies. Procedures. Branding. Australian Charities and Not-for-profits Commission registration. Deductible gift recipient endorsement. The lawyer handling the DGR registration said she’d never seen a matter move that quickly.
The Foundation was publicly announced in February 2026.
The Meeting
Blair Boyer took the health portfolio in mid-2026.
On July 30, 2026, Chris went into a meeting with Allison Willis to meet the Minister and Professor Michael Cusack, SA Health’s Chief Medical Officer.
Deb wasn’t there. She was in Queensland looking after her grandsons, Mason and Harry, while their mother Hayley settled into a new role in Operations at the Royal Flying Doctor Service. Which is its own kind of answer to what this family does.
But here’s the thing: Allison Willis wasn’t a bystander to any of this.
She’s spent 35 years in health. She started as a Director of Nursing at CARA’s disability healthcare support service. Nine years at the Nursing and Midwifery Board of Australia. Principal Adviser Policy and Strategy at the Health Consumers Alliance of South Australia. When that organization closed, she established and still convenes the Health Consumer Advocacy Network SA so consumers in the state wouldn’t be left without an independent voice.
Most directly relevant? Between February 2023 and June 2024, SA Health engaged her as a policy consultant to run a consultative review with consumers, Local Health Networks, and SAAS. She updated the state’s strategic frameworks for consumer feedback, complaints, and consumer engagement.
In other words, the person walking into that meeting had already written the ground the escalation protocol would sit on.
Chris went in expecting resistance. He’d prepared for it.
Boyer listened. Then he turned to Cusack and asked for his view.
Cusack had the submission in front of him.
He agreed with it.
On July 1, 2026, SA Health committed to a mandated escalation protocol. The department’s “You’re Worried, We’re Listening” review is now out for public consultation. The Foundation has lodged its response. The initiative carries Ryan’s name: Ryan’s Voice.
Twenty-two months from that first letter in September 2024 to this ministerial commitment.
People who work in this space put the usual timeframe at three to five years.
Allison, decades into this work, said afterwards that the case Chris had brought did what years of system-side reform hadn’t managed on its own.
How They Actually Did It
Chris is direct about the method, and it’s not complicated.
“Instead of continually complaining, we wanted to bring solutions to the table.”
They didn’t walk into that meeting angry. They walked in with three state models, documented outcomes, and a specific recommendation. They made the decision easy.
There’s a second part to it that Chris attributes to their family GP, Dr. Tasnim Khan: “If you don’t ask, you don’t get.”
And a third part, which is Deb’s, learned across 33 years of hospital corridors: “You get more flies with honey.”
In the hospital, when Deb was advocating for Ryan, she’d take the nurse coming on shift to the side and tell them what to watch for. What the nuances were. What would make Ryan easier to care for. Not confrontation. Useful information that only a long-term carer had.
That’s the posture they carried into every meeting, every email, every submission. Most people in the health system want to do right by their patients. They’re stretched, under-supported, and frequently missing information. The Foundation’s position is simple: you lift the 95% who want to do better rather than pursue the 5% who fail.
The Team Behind It
No campaign runs on two people. Chris and Deb built the coalition deliberately.
Allison Willis - Director of Health Consumer CoLab, convenor of the Health Consumer Advocacy Network SA, 35 years across nursing, professional regulation, and health consumer policy
Camilla Rowland - Former CEO, Palliative Care Australia
Shyla Mills - Palliative Care SA
Professor Gerry O’Callaghan - Adelaide medical education
Dr. Gerald Hickson - Vanderbilt University, who’s implemented comparable protocols
Kirsty Whitehead - Governance director across multiple nonprofits
Peter Taylor - Sydney lawyer, acting pro bono
Shane Haggas and Rebecca Cutting - Ambulance officers advancing regional palliative care
The DAISY Foundation - The international nurse recognition programme, now partnered with the Foundation
What’s Running Now
Ryan’s Voice - Ensuring the escalation protocol is implemented properly and that patients and carers actually know the right exists. A commitment is not an outcome.
The Ryan Bowman Palliative Care Scholarship - Funding end-of-life care training for nurses, ambulance officers, orderlies, and doctors, with the aim of building mentors in each regional area. The inaugural scholarship was awarded on May 5, 2026, in partnership with the Limestone Coast Local Health Network. HITsa Charitable Fund came on as inaugural corporate sponsor.
DAISY Award Programme - Bringing the international nurse recognition programme into South Australian health networks. Deb is Australia’s only mainland DAISY Ambassador.
Ambulance Wish - Extending a metropolitan palliative care programme into regional South Australia.
The driver behind all of it is workforce. Australia has roughly 0.3 palliative care specialists per 100,000 people. Most end-of-life care in this country is delivered by general nurses and doctors who receive very little training in it.
Chris and Professor O’Callaghan, who trains the next generation of healthcare workers, talk about this. The professor said, “Sometimes we come to work and don’t present the best version of ourselves. But we focus on the 95% who do a great job.”
That’s their approach too. They’re not trying to punish the 5% who fail. They’re trying to upskill the 95% who want to do better.
What Matters Most
Ask Chris what he wants people to know about Ryan, and he doesn’t talk about the medical history.
He talks about football. Ryan could pick a multi better than anyone Chris has ever met. Over twelve months, Chris reckons, he missed one.
It’s the kind of detail that makes someone real rather than a case number. Which is the whole point. The system deals in patients. Families deal in people.
Deb’s Book
Deb has written a book. Thirty-three years of caregiving, advocacy, and grief, written by the person who lived it.
It’s the sort of account that doesn’t exist anywhere else. Not a clinical text. Not a memoir of loss. But a working record of what it takes to keep a child with complex needs alive and heard inside a system that’s not built for either.
It needs a publisher.
If anyone reading this works in publishing, that’s the ask.
Connect With Deb, Chris, and the Foundation
If you want to learn more about the foundation or support their work:
Facebook: Ryan Bowman Legacy of Care Foundation
Instagram: Ryan Bowman Legacy of Care Foundation
LinkedIn: Ryan Bowman Legacy of Care Foundation
Website: ryanbowmanlegacy.org.au
Final Thoughts
Deb spent 33 years fighting for Ryan. She learned through decades of medical battles how to advocate effectively. How to push without being pushed back at. How to make healthcare workers want to do better for her son.
When Ryan’s end-of-life care shattered her, she didn’t wait for time to pass. She didn’t accept grief as the end of the story.
She started the fight in September 2024, while Ryan was still alive. She documented the failures. She refused to accept that this was just how things were.
She and Chris, her partner who brought 40 years of professional expertise to turn lived experience into policy, changed a healthcare commitment in South Australia in 22 months. They moved something that experts said would take three to five years.
That book Deb wrote, the 33-year chronicle of caregiving? It’s seeking a publisher. Flinders University is already using it to teach.
If you’re thinking about advocacy but wondering if you’re qualified, or if you have enough time or connections, Deb’s story says otherwise.
You just need to identify the problem from lived experience. Bring solutions, not complaints. Find your people. Do not stop pushing.
And start before you think you’re ready. Before the crisis reaches its peak. Before it’s too late.
That’s what Deb did for Ryan.
That’s what Deb and Chris continue to do every day.
If you’re dealing with end-of-life care for a loved one, or if you’ve experienced poor palliative care, reach out to the Ryan Bowman Legacy of Care Foundation. If you’re a caregiver who’s had to advocate fiercely for your loved one, know that your voice matters. There are people building systems to make sure it’s heard. Deb and Chris are proof of that.
