Investigating the impact of music for children with Batten disease

Batten disease is a rare neurodegenerative condition affecting approximately 150–200 children and young people in the United Kingdom. It leads to progressive loss of skills, with most individuals not surviving beyond adolescence. While current research primarily focuses on clinical trials for gene and enzyme replacement therapies, there remains an urgent need for therapeutic and educational strategies that support affected children and their families in the present. Music has been identified as a meaningful support mechanism for individuals with Batten disease, yet empirical research in this area is limited. Drawing on developments in neuroscience and music therapy, this study explores how music supports children with Batten disease through semi-structured interviews with parents and carers. Thematic analysis revealed three key themes: music and well-being; music’s role in supporting functional skills; and the use of music in care settings. Findings highlight music’s emotional, communicative, and functional value, providing insights for educators and healthcare professionals. This research contributes to the growing evidence base for music-based interventions for rare neurodegenerative conditions.