Story
What happens to people who don't have what we had?
After losing her husband Phil to MND, Helen O’Neill is speaking out about the realities of caregiving, regional healthcare gaps, and the urgent need for better support.
When Helen O’Neill travelled from rural Tasmania to Parliament House earlier this year, she carried with her more than grief.
She carried the reality of what it means to care for someone living with motor neurone disease in a system that is simply not built for it.
Standing before parliamentarians at the launch of MND Australia’s Parliamentary Friendship Group for motor neurone disease, Helen shared the story of her husband Phil, a fiercely independent outdoorsman who died in July 2025, just 280 days after his diagnosis.