Table 2.

Theme 1: Challenges of life for patients, categories, and participant's voice.

Category	Participant's voice
Disease progression	“After a while, talking becomes a struggle, and a little later, walking turns into a challenge. A bit later, even eating gets tough. And then, well, even using the bathroom becomes a real hassle. It is like tumbling down a hill, you know, or more like suddenly the illness just nosedives, like falling off a cliff.” (No.1, mother of juvenile type patient)
Complication progression	“And then, uh, the tension in my body was just, like, crazy strong, and umm, my hand would just, you know, shoot out in front of me, both of them, just like that, extended out, bam, like this. Uh, like, when I try to do something, too much force gets applied, and my hand just ends up staying out there, like boom, left extended.” (No.1, mother of juvenile type patient) “Well, [they would be like], ‘Hey, it is becoming tough for you to walk,’ and then they would suggest wearing a leg brace, or you know, some kind of support. So they would go ahead and make this brace and put it on foot, and then, well, oh, they would come up with stuff to help with walking, like support and all that jazz.” (No.1, mother of juvenile type patient)
Coordination of life support	“Yeah, well, I noticed that taking baths was harder and harder. But you know, I was not in trouble with the other stuff, to be honest.” (No.3, mother of late-infantile type patient)
Patient communication	“And, well, this person, um, they really express themselves fully, yes, like raising or lowering their pulse. It is not like just saying there is phlegm stuck or something, but it is like they have looked into it, and they know that a certain sound happens when they do this, and then, lo and behold, [their] mother comes. Yeah, it is like they have set up a saturation monitor instead of using their voice, which is kind of creative.” (No.2, mother of late-infantile type patient)
Interaction with the outside world	“Ultimately, all the helpers and nurses interacting with this person are adults, right? So, spending time with individuals from the same generation is super important, you know, because the way they communicate is just totally different.” (No.2, mother of late-infantile type patient)
School-related issues	“Yes, that is right. I mean, when I say they are going to school, [they] put on this really nice face, and, uh, I figured it must be a bit tough for them, but I am all like, ‘Let me do this!’ And, um, well, when they come back, they are all happy and stuff. So, yeah, I kind of got this feeling that they were genuinely glad they went.” (No.4, mother of late-infantile type patient) “Yes, that is right. It is extreme, but, well, once the respirator is on, well, um, our school, um, it became home [schooling].” (No.4, mother of late-infantile type patient)