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Wife of man living with cystic fibrosis speaks of 'amazing' progress after receiving 'miracle' drug

The wife of a man living with cystic fibrosis in Burnham has spoken of his ‘amazing’ progress after receiving a ‘miracle’ drug.

Darren Waite received the Trikafta medication (known as Kaftrio in Europe) on ‘compassionate grounds’ from US biopharmaceutical firm Vertex Pharmaceuticals in January following a social media campaign and an appeal from Frimley Park Cystic Fibrosis Unit.

The 42-year-old saw his health take a turn for the worse after he suffered complications including a series of chest infections, a bowel blockage in March 2019 and a perforated bowel in August 2019.

He was given ‘months to live’ in January.

The medication, which is set to become available to NHS patients after a landmark deal was struck, will be available in Europe as soon as its licence is granted.

Discussing his progress, his wife Jane said that within hours of taking the drug, Darren brought up four-cups full of mucus in one day, which had been building up on his lungs and blocking his airways, leaving him susceptible to chest infections.

Jane said: “[This] was absolutely huge as he could then take deeper breaths.”

Two days after receiving he drug, Darren, who was unable to ‘do anything for himself’, couldn’t walk and was living downstairs, walked up the stairs again.

Just two weeks later, Darren, who initially weighed 60 kilos and went down to 48 kilos during his period of ill-health, reached 62 kilos and was even making deliveries for Jane’s floristry business.

Darren no longer needs oxygen when he goes out and has gone months without needing IV antibiotics.

He is now able to exercise, uses the gym in their garden everyday, and even completed a 10-mile bike ride without oxygen.

Jane added: “Its just an amazing drug, I still can’t believe it. He can just have a normal life which is something we thought was far out of our reach.”

Darren said: “It has given me more freedom to do the things I have dreamed of like travelling without restrictions, socialising without fear of catching infections, but most of all planning a future I thought I would never have.”

Darren has also featured in a video by fellow cystic fibrosis patient Marc Cotterill, celebrating the drug being made available on the NHS. Search m4rccotteril on Facebook.

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