Finding into death of TPK

6y · Unknown·Complications of Pelizaeus-Merzbacher disease

TPK was a 6-year-old with Pelizaeus-Merzbacher disease (PMD), a progressive neurodegenerative leukodystrophy diagnosed at birth causing profound disability and seizures. Placed with foster parents Mr and Mrs JEP via Department guardianship and a Long-term Care Order, he received comprehensive multi-disciplinary care including paediatrics, palliative medicine, NDIS support, physiotherapy, speech therapy, and community home-based services. During his final year, his condition deteriorated with escalating pain, reduced food tolerance indicating emerging gut failure, and declining consciousness. In October 2025, he was admitted to hospital with fever and reduced urine output; antibiotics were appropriately deemed inconsistent with his comfort-focused goals of care. Discharged home on enhanced palliative measures including continuous subcutaneous infusions of opioids and benzodiazepines, TPK died peacefully in his foster mother's arms on 11 November 2025. The coroner commended the exceptional care provided by his foster family and treating medical teams. No clinical error or preventable factors were identified.