1 Leve NÅ - Paediatric Palliative Care Unit, Frambu Foundation, Sandbakkveien 18, Siggerud, 1404, Norway. gtr@frambu.no.
2 Faculty of Health Sciences, Department of Nursing and Health Promotion, Oslo Metropolitan University, Pilestredet 32, Oslo, 0166, Norway. gtr@frambu.no.
3 Faculty of Health Sciences, Department of Nursing and Health Promotion, Oslo Metropolitan University, Pilestredet 32, Oslo, 0166, Norway.
4 Leve NÅ - Paediatric Palliative Care Unit, Frambu Foundation, Sandbakkveien 18, Siggerud, 1404, Norway.
5 Frambu Resource Centre for Rare Disorders, Sandbakkveien 18, Siggerud, 1404, Norway.
6 Department of Neurology, Unit for Inborn and Hereditary Neuromuscular Disorders, Oslo University Hospital, Sognsvannveien 20, Oslo, 0372, Norway.