Sub-theme 1: Early childcare and social development

[1a] Participant (08): “… when you’re also dealing with like daycare providers—and they’ve got a lot of kids they’re dealing with—and how do you make sure that your child is getting what he or she needs at the daycare?”

[1b] Participant (15): “I know it’s something my family personally has faced; the quandary of needing to work but not being able to because of the severe needs, you know, the high needs and the maintenance needed at home with the condition.”

[1c] Participant (07): “And this mum… came in crying… I said ‘You know what, like, if this is causing you too much stress…that’s not my intention’… she just kind of burst out crying and hugged me and she said ‘Oh my god, no. I’m so happy,’ she said, ‘my daughter is 4-and-a-half [years old] and this is the first time she’s ever been with children’.”

Sub-theme 2: Transition to school

[2a] Participant (07): “You know you’ve just got the daycare all on board [with managing the disease], and you’re done daycare, and now you’re going into the school system. It’s just over, and over, and over, and over again.”

[2b] Participant (15): “…often [the symptoms] our children experience are difficult for others to detect. So that’s always a concern for parents, you know, in the school setting or any kind of setting outside… especially when someone else is filling that caregiver role you know either at school or the parents are at work and things like that.”

[2c] Participant (06): “… he’ll [the participant’s affected son] come home and he’ll say ‘Mummy, I just walked away from them [other children] because, you know what? They’re not nice and I don’t need them as friends’, you know… because his speech isn’t where it should be it makes him very hard to understand and that causes a lot of social, you know… no, not social issues; but he couldn’t express himself in the beginning…”

Sub-theme 3: Transition through adolescence

[3a] Participant (12): “One of [the participant’s son’s] big challenges—and I think it is for a lot of the kids—is socializing… [he] had a really close friend, but unfortunately he moved away. And kids are really good with him, but no one who’ll come over and play. I don’t blame them. I know back when they were 9 or 10 they wanted to play baseball; [he’s] not playing baseball. And they’re at the age where they talk really quick and they do things really quick and [he’s] in a wheelchair now and, you know. So, like I said they’re always incredibly friendly but there’s nobody who would come over and watch a movie with him.”

[3b] Participant (09): “I think the only adherence issues we see, as a rule, tends to be at the moment of transition, and the young people being fed up with being told what to do and saying that they’re going to make their own decisions and not adhere to the diet or to the medication because it’s their choice.”

[3c] Participant (13): “… you know a lot of the children… are now, as it were, the oldest children who’ve ever lived with these conditions… So, there’s no experience of how you provide services and support for people in this position; essentially you’re making it up as you go along…”