TABLE 2.

Social support perception in mothers’ and fathers’ narratives.

		Fathers’ quotations	Mothers’ quotations
Personal growth	Self-awareness		It has opened a window on my inner world
	Optimism	It helped me to see positive things too
Emotional support	Understanding	When you talk, you know you’re understood	We speak the same language that comes from the same kind of suffering
	Sharing emotion	It has always been useful to share feelings and ideas	It was useful to be able to express certain angers, certain misunderstandings
	Leisure		There were beautiful moments of joy, moments in which I felt the desire to have fun, to have moments of serenity between us, normal moments, the desire to feel happy
Informational support	Suggestions	The people in the group helped me because they taught me what to say, how to do it	We have practical indications on what we do, how we handle the subject of sterilization at home, for example
	Experience	In the group, there are people with much more experience than me who can help me	The experiences you have in the group become yours, like a small amount of experience
	Comparison	If we look at the children of colleagues, they are all graduates, engineers, all highly sought after by companies, excellent in everything; it seems to us that only we have this reality, this nightmare…instead, in the group, we see that we are not alone	It didn’t just happen to me; it also happened to others, and, in the end, L. (daughter) is better off than others
Social function	Visibility	I created a website to talk about the syndrome	One of the fundamental things was to have visibility; together, we could find transversal topics of interest
	Social action	I participated in writing “The White Book,” which denounces a situation of disadvantage to the institutions, the heavy situations that we live	We work to make institutions understand how rare these patients are and what needs they can have, starting with basic things like dental devices, which are not an esthetic cure but rather a fundamental support