“I know it has had a big impact on my 2 other children, because of this condition that my child has PCD, you know. Because they can see I give her more time and I don’t have enough time for them and even if I do, I’m just too tired that my attention is not with them, especially when it comes to homework and just other stuff, you know cos I’m just physically run down and tired doing all the chest physio and stuff like that. I get tired myself, you know what I mean.” (mother 14)
Parents received support from friends and family, however reported feeling that nobody understood exactly what they are going through. The following mother explained: