Table 1.

Characteristics of cohort

	Median	Range
Age at diagnosis (months)	6.5	3.5–21
Age of first dose nusinersen (months)	8.1	0–85.7
Age at initiation of Long Term Ventilation (months)	8.1	2.3–36.5
Age at initiation of advanced care pathway (n=4) (months)	21.3	7.1–70.8
Number of admissions per child*	11	1–25
Number of emergency admissions per child*	3	0–21
Number of elective admissions per child*	4	0–9
Hospital days per child*	84	7–235
General paediatric hospital days per child*	0	0–63
HDU days per child*	79	7–173
PICU days per child*	13	0–109

*Over 24 months.