The global health emergency of COVID-19 in early 2020 placed much of the population under quarantine. Interstitial Lung Disease in childhood (chILD) was recommended to be a paediatric clinically extremely vulnerable (CEV) group in April 2020 for shielding due to the unknown health consequences of COVID-19 in children with chronic respiratory conditions. This qualitative longitudinal research study explores how chILD parents in the UK experienced COVID-19 lockdown from over two interview time points. Participants ( n = 8) were recruited from chILD patient organisations and online communities. Interview one focused on the period between January 2020 to July 2020, gaining personal insight into respondent’s experience of lockdowns, which included questions on support systems and media coverage of COVID-19. The second interview asked how respondents managed further UK lockdowns between September 2020 and May 2021. The main themes were uncertainty and adaptation. Respondents described how they navigated the UK lockdowns and undertook various risk management strategies for pandemic isolation. Once these were established, routine and positive family bonding was reported, along with a reluctant acceptance of the COVID-19 virus and continued shielding. As new COVID-19 information emerged, risk management strategies changed or remained for some respondents, bringing a feeling of living with COVID-19 as a ‘new’ normal. Understanding the unique insights people with rare diseases such as chILD face during a global pandemic adds to policy and healthcare literature. Recommendations include further study of caregiver traits and resilience, essential facets of positive pandemic adaptation.