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Social media campaign grants cystic fibrosis sufferer potentially life-saving drugs

A social media campaign has led to a man with cystic fibrosis being granted a potentially life-saving drug which is not yet available in the UK.

Darren Waite, 41, from Burnham, received the Trikafta medication, breakthrough therapy for his genetic condition, on Friday on ‘compassionate grounds’ from US biopharmaceutical firm, Vertex Pharmaceuticals, who answered an appeal from Frimley Park Cystic Fibrosis Unit.

The news followed weeks of social media campaigning on Facebook and Twitter under the #DarrenCantWaite hashtag, and the creation of a GoFundMe page raising money for the medication.

Darren, who also overcame testicular cancer in 2004, has been on oxygen 24 hours a day and was told he was looking at ‘end of life care’ last month after tests showed his lung capacity at 13 per cent.

His wife Jane, 42, a florist, said he had been able to maintain ‘a level health’ for most of his life, but he has suffered a series of health complications since March last year, includ-ing a fractured rib followed by a bowel impaction.

In August, he suffered a perforated bowel, caused by a steroid that he was on to help his lungs, and he spent three weeks in hospital.

The couple subsequently had to return from a dream holiday to the Maldives early after Darren went down with flu.

“From that point his lungs just rapidly declined,” said Jane. “At the beginning of the year, if you go from January now to January last year, his capacity was 26 per cent and then in January this year it was 13 per cent and that’s all within 2019.”

Darren was hospitalised two days before Christmas with a severe infection and spent the festive period in hospital.

He then received the news that he was looking at ‘end of life care’.

“Your world just crumbles, doesn’t it?” said Jane. “I just felt beside myself.”

The family received the call to say he would be receiving the Trikafta medication on Tuesday, January 28 and it was delivered three days later.

The drug addresses the faulty gene in cystic fibrosis sufferers which creates a sticky mucus that builds up in the lungs, leaving them open to infection and clogging up the airways.

Describing the moment she got the call, Jane said: “It’s just one of those moments you’re sort of elated and it doesn’t feel real. It will just give him that lease of life to maybe explore some of the avenues before he can’t.”

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