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6-year-old cystic fibrosis sufferer takes first dose of 'life-changing' drug Orkambi

After years of tirelessly campaigning, a mother from Portsmouth has finally been able to see her 6-year-old daughter take the 'life-changing' drug Orkambi.

Gemma Weir's daughter Ivy has cystic fibrosis, which is a condition that causes sticky mucus to build up in the lungs and digestive system.

It can cause breathing problems and increase the risk of lung infections.

The drug Orkambi treats the cause of the condition rather than just treating the symptoms.

I'm so happy. I'm relieved as well really because it's like extended life in our hands and a healthier future, so it's really promising and like hope in the form of a pill. Now that Ivy has had that medicine, there will be things going on in her body and the cells inside will be starting to change and that's magic. It's incredible medicine it really is. So clever."

– Gemma Weir, Ivy's Mother
Gemma has campaigned tirelessly to make Orkambi available on the NHS Credit: ITV News Meridian

Last year the Government announced the drug would be available on the NHS following a dispute which continued for more than three years over the cost of the drug, which is said to be more than £100,000 per patient every year.

5,000
patients will receive Orkambi on the NHS

A deal was finally struck between US drug company Vertex and the NHS to supply the drug for children over two years old.

Gemma hopes it will transform Ivy's life.

Orkambi helps around half of cystic fibrosis sufferers, but new drugs are being developed that could help even more.

The drug is said to cost more than £100,000 per patient every year. Credit: ITV News Meridian