Ahead of a Parliamentary debate about access to a cystic fibrosis drug, the family of four-year-old Harriet Corr recorded a video diary to show the impact of living with the condition.
More than 10,000 people in the UK have the debilitating genetic lung condition and for about half of them, Orkambi could make a big difference - but the NHS says it is too expensive to fund.
The official list price of the drug is about £105,000 per patient per year. Maker Vertex says that, in practice, the price negotiated with healthcare systems is always lower than that.
Harriet's mum Emma, says being able to have access to the drug is the "dream".