The mum of a three-year-old with genetic lung disease cystic fibrosis wants her daughter to have the drug that can control her condition.
Kimberly Roberts wants Ivy to access one of the most advanced treatments – the drug Orkambi.
But the manufacturer and NHS bosses have been locked in arguments over its £100,000-a-year price tag since 2015.
“Our children deserve to have it – deserve to live a healthy long life. Without that drug they won’t have one,” said Mrs Roberts.
NICE – the body which recommends whether a drug or treatment is available on the NHS – has said that the ongoing bills for the drug would be “considerably higher than what is normally considered a cost-effective use of NHS resources”.