13/05/2026
“Seizures are cruel and unpredictable. Seemingly grabbing hold of our beautiful Grace, causing pain, exhaustion and permanent neurological damage to an otherwise perfectly healthy child.”
Within hours of Grace’s birth, her family noticed something wasn’t right. What followed was a life shaped by complex care, constant monitoring, and navigating a reality that often felt overwhelming.
As Grace’s mum and dad, Kimberley and Andy, share:
“As new parents, we were not only thrown into a world of hospitals, specialists and uncertainty, we were in shock at our new reality and devastated for our only child who would become profoundly disabled and not survive infancy or reach school-age.”
But alongside the challenges, there was also deep love and connection - the small moments that meant everything. “Her smiles and immediate recognition of her Mum and Dad.”
Bear Cottage became a place where those moments could be protected.
“For the first time in a long time, we could take a breath. We could sleep. We could spend time together as a family without the same level of pressure and fear."
“Palliative care isn’t about giving up. It’s about improving quality of life, however long that life may be. It’s about supporting the whole family and not just the child.
“And importantly, Grace could just be Grace.”
This National Palliative Care Week, we recognise that paediatric palliative care is about more than medical support. It’s about living, creating space for connection, and helping families hold onto what matters most, for every moment they have together.
➡️ Read Grace's story on our website https://bearcottage.schn.health.nsw.gov.au/articles/2026/04/national-palliative-care-week-graces-story
