A Wallingford mother fighting for a life-changing drug for her daughter has campaigned for hundreds of children to write to the Prime Minister.
Zoe Bagley’s four-year-old daughter Grace, has genetic disorder cystic fibrosis that affects her lungs. It has already led to multiple long-term stays in hospital during her short life.
Campaigners have been battling to get a drug prescribed on the NHS called Orkambi, which could slow the decline in lung function by half in patients with a particular strain of CF.
More than 100 children have written letters to Theresa May to ask for Orkambi to be available in the UK.
The letters, organised by the Cystic Fibrosis Trust, will be hand delivered to 10 Downing Street on June 16, among them are letters from Grace’s six-year-old brother Edward and his school friends.
He wrote: “My little sister has CF. Please can you give her Orkambi so she doesn’t have to go into hospital all the time.”
Discussions between Orkambi manufacturers Vertex and NHS England have been slow moving as the organisations negotiate over costs but are due to meet again next Friday.