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Spalding family's joy as life-changing drug is made available on NHS




An overjoyed Spalding teenager with cystic fibrosis and her family are celebrating as a life-extending drug becomes available on the NHS.

The drug, Orkambi, improves lung function and reduces breathing difficulties - and it could be a huge turning point for aspiring actor and dancer Crystal-Jane De-Camps (17).

News of the drug's coming availability in England was announced on Thursday, when it was said patients would get the medication within 30 days.

Crystal-Jane De-Camps celebrating with sister Sophie-Louise, brother Oscar and and mum Louise
Crystal-Jane De-Camps celebrating with sister Sophie-Louise, brother Oscar and and mum Louise

The teenager's mum Louise, told us: "When we got the news, Crystal-Jane said 'Mum, this is the best day of my life'.

"It's amazing. We can't wait until we get to her next clinic, which is on November 5. Normally we dread clinics but this one we are excited to go to."

Crystal-Jane told us: "I feel so happy that it has been released into the NHS and believe it will change everything for people living with cystic fibrosis."

The family hope Orkambi will halt the decline in Crystal-Jane's lung function, reduce her hospital admissions, give her a more normal lifeand extend her life.

Louise explained: "Her lung function has been declining really quickly - 88 per cent down to 76 per cent in a matter of six months."

The teenager, who goes to Boston College, is now looking at universities to continue her education in musical theatre.

Cystic fibrosis is life-limiting and chiefly affects the lungs and digestive system.

Two weeks ago, Louise voiced hopes that Orkambi would be made available on the NHS in England.

The mum was speaking after South Holland and the Deepings MP Sir John Hayes asked in the House of Commons for Orkambi to be made available to patients in England.

His intervention was inspired by the loss of a family friend, who had cystic fibrosis, and died before she could become Godmother to his younger son, Edward, now 15.

This week the MP said: "It's great news. I was so proud to champion this campaign in the House of Commons and I am so pleased with the success.

"There will be thousands of people who will now get what they deserve, which is a better quality of life as a result of this treatment.

"I just want to thank the Government for responding to the campaign and share the joy of the families who will have this welcome news."



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