CYSTIC fibrosis sufferer Rob Skinner is celebrating after becoming only the 12th person in the country to be prescribed a new drug to help prolong his life.

The 21-year-old, who lives in North Swindon, was diagnosed with the condition when he was 16 months old and now has a lung function of approximately 19 per cent.

However, a transplant is not an option for Rob because of a bug in his lungs, called atypical mycobacterium abscesses.

Previous medication to treat the bug has resulted in him losing his hearing and suffering with tinnitus.

Rob has spent the past three years trying to get on the trials for a drug called Kalydeco, which has been approved by the Food and Drug Administration in the United States.

Now, nine months after his first request for compassionate use of Kalydeco, Rob was this week prescribed the medication, to the surprise of his parents.

He said: “My mum was so shocked and over the moon. She said it was like winning the lottery. She felt as if she was dreaming.

“I had some idea of the decision for a week, but didn’t want to say, just in case nothing happened. I’ve got my hopes up in the past, only to hit more roadblocks, so I wanted to be 100 per cent sure that it really was happening.

“It did feel, and still does feel, like a dream.

“I really can’t believe after all this time I am now on Kalydeco. The medicine has to be taken with a fatty meal, so straight after hospital me and mum went to a pub nearby to have a meal and I took my first dose.”

Kalydeco, which costs approximately £190,000 to £250,000 for each patient every year, is the first available drug that targets the underlying cause of cystic fibrosis and increases lung function for sufferers like Rob.

In his case, the drug is being paid for by pharmaceutical company Vertex.

“I really am delighted. I’m over the moon,” said Rob.

“It’s strange to think that I won’t need to send any more emails or chase it up anymore. I feel like it’s a weight that’s been lifted off of my shoulders.

“In theory, it should return mucus production back to normal, so there shouldn’t be anymore sticky mucus that is so difficult to cough up.

“It’s quite untested, though, in people of my lung function, so the doctors aren’t even sure what will happen just yet.

“But I’ve been speaking to others in the same position and they are already seeing noticeable improvements.

“I’m hoping it will help me clear my two active chest infections, as I haven’t been able to get rid of them for years.

“Hopefully, if I can get rid of them, it would stop future damage to my lungs.

“Kalydeco won’t repair the damage that’s already done, but it will help in so many ways. I’ve spoken to people who have come off the transplant list because it’s helped them so much.”

Rob is part of a group called Quest For Kalydeco, which has created an online petition for the drug to be made available on the NHS for all those with the G551D mutation like Rob.

To sign the petition visit http://epetitions.direct.gov.uk/petitions/34753.