CERYs’s STORY
TEENAGER Cerys Upstone has written to Vertex urging them to cut a deal with the NHS so cystic fibrosis sufferers like her can have Orkambi.
The 14-year-old wrote: “I know my health could deteriorate even further, and with cystic fibrosis being so unpredictable it could happen at any time.
“Please help me reach my potential and maintain my health for as long as I can.”
Cerys, of Brackley, Northamptonshire, was diagnosed when she was four weeks old and takes more than 40 pills a day to treat the symptoms.
She told the Daily Express: “When I have time off, due to hospital admissions or appointments, it can be really difficult to catch up at school.
“I’ve missed lots of social events with my friends due to being ill in hospital.
“I was even ill for Christmas a couple of years ago. I always worry about getting infections, I hate staying in hospital.
“Having Orkambi would mean I wouldn’t have to worry about getting infections as much and would make living with cystic fibrosis much less stressful.
“People in other countries have access but we don’t. I don’t understand why we are being left behind.”
Cerys’s mum Catherine Upstone, 49, said: “I am frustrated by the wait for Orkambi. Every day counts when you suffer with cystic fibrosis.
“We have been waiting for three years. It doesn’t seem possible that in England we’d allow children to suffer unnecessarily.”