Damilia Kelly Holmes, a 15-year-old Aboriginal girl, died from complications of Batten disease (CLN3) while in palliative care. She was in out-of-home care under the Territory Families and Housing (TFHC) and was loved and well-cared for by her carer Ms Teasdale. Key clinical challenges involved coordinating disability support funding between the NDIS and child protection services, with periods of uncertainty about responsibility allocation. The coroner commended the care provided and acknowledged systemic difficulties in funding rather than clinical failures. A Disability and Development Team was established in 2020 to support children in care. The coroner noted no clinical preventability issues and made no recommendations, indicating the care received was appropriate given the progressive nature of Batten disease.
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Specialties
palliative carepaediatricsneurology
Clinical conditions
Batten diseaseCLN3
Contributing factors
progressive neurodegenerative disease
funding coordination challenges between NDIS and child protection services
uncertainty about division of responsibilities for disability support funding
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