Little Harriet Corr, six, living a happier life a year after starting her ‘magic medicine’ to ease cystic fibrosis

Not many people will say that 2020 was better than 2019, but Harriet, six, is one of them. In January 2020 she received her first dose of the revolutionary drug Orkambi, made by US pharmaceutical giants Vertex.

Her parents Emma and Chris Corr, from Jarrow, had campaigned for years for the drug to be available on the NHS. It was too expensive to buy privately and at one point they considered moving to Scotland as it was available there. It cost a reported £104,000 per patient, per year, although Vertex disputed the figure.

But eventually, in October 2019, Health Secretary Matt Hancock agreed a deal with Vertex bosses that would change the life of Harriet and around 5,000 other sufferers.

At just five days old Harriet, who attends St Matthew’s Primary School with big sister Nancy, nine, was diagnosed with the condition which causes sticky mucus to build up in the lungs.

She would spend terrible nights awake coughing, which kept her parents up too. She was on a cocktail of drugs and would miss days at school.

Emma, 40, and Chris 38, are thrilled by the transformation. Things could soon be better still as Harriet is expecting to use an improved version of Orkambi before Christmas 2021.

Emma, an English teacher, said: “It’s unbelievable when you compare 2019 with 2020.

"She was in and out of hospital all the time and had to have antibiotics. Since she started Orkambi in January 2020 she hasn’t had any of that.

“In cystic fibrosis terms this is pretty much unheard of. A complete reverse. She used to be up all night coughing.

"It was terrible and 2019 was our worst year ever. It was the absolute pits and there seemed to be no light at the end of the tunnel; 2020 couldn’t have been more different.

“She’s put some weight on too now and grown taller. She loves going to school and, apart from when she couldn’t go because of covid rules, she hasn’t missed.

“Harriet understands that taking her medicine really is key. She still has treatment and does physio. But Orkambi is keeping her out of hospital.”

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