Severe childhood onset neuromuscular disorders (NMD) such as Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD) cause muscle weakness that precludes attainment of walking or necessitates wheelchair dependence usually by adolescence [1]. Physical health is compromised by lack of ambulation and progressive muscle weakness leading to co-morbidities across body systems [2]. Cardiorespiratory system co-morbidities restrict life expectancy [2, 3]. Survival well into adulthood is possible with timely provision and uptake of best practice interventions including use of corticosteroids, spinal fusion, and non-invasive ventilation (NIV) [4].

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