Table 1.

Most stressful memories and flash forwards related to the IEM of their child

Case 1 (father)	Case 2 (mother)
Stressful memories
Comforted the child in the hospital, saying that everything would be okay after a minor ENT operation (grommets). Now the diagnosis MPS III is known, it became clear that ‘everything would not be okay at all’ (failure as parent, SUD 7)	The pediatrician communicated the diagnosis MPS III to the parents (SUD 9)
The pediatrician communicated the diagnosis MPS III to the parents (SUD 6)	Termination of a subsequent pregnancy because the fetus was diagnosed with MPS III (SUD 8)
	Announcement from the hospital that the clinical trial (enzyme replacement therapy [30]), in which the child participated, was prematurely terminated (loss of hope, SUD 7)
	Attending the funeral of another MPS III patient (SUD 6)
Flash forwards
Funeral of their child with MPS III (SUD 9)	Her child in a vegetative state with palliative care by deep sedation and withholding of fluids (SUD 10)
Image of the child in a special disability-inclusive transport necessitating a lot of medical equipment (tubes) and making repetitive movements and screaming sounds (SUD 8)	Her child in a wheelchair, no longer able to communicate by laughing, eye contact or movements (SUD 8)
	Sudden death of the child (SUD 7)

SUD subjective units of disturbance score