As the mother of a 12-year-old boy with cystic fibrosis, Jeni Beviere says she lives in fear she will one day have to watch him lose his fight to the condition.

The 42-year-old, of Pembury, is one of thousands of people battling for a life-extending drug to to be made available on the NHS - medication she says could add another two decades on to her son's life.

Diagnosed with cystic fibrosis in 2016, aged nine, Josh Beviere has to take around 40 tablets a day in an attempt to stay strong and fight off infection.

Orkambi can actually slow the decline in lung function - the main cause of death among people with the condition - but at £100,000 per patient per year the health service says it cannot afford to offer the drug.

Negotiations about the price with manufacturers Vertex stalled after a £550 million offer for a five-year supply of the medicine was declined by the pharmaceutical company.

Mrs Beviere, Henwood Green Road, said: “It would add another 23 years on to my son’s life.

“The medicine’s Josh takes now treat the problems instead of preventing them from happening, which Orkambi would do.”

The mum is fighting to get 100,000 signatures on a petition to spark a parliamentary debate, in an attempt to pressure the government to break the deadlock.

She added: “I will never get used to the fact that I may well bury my own son and watch him stop breathing but now we are going to fight for this drug.”

If no agreement can be made with Vertex, campaigners want the government to overrule the patent through a legal provision called Crown Use, allowing cheaper versions of the drug to be made.

Other European countries including France, Germany and Ireland have already struck deals with Vertex to make the drug available to citizens.

Carlie O’Hare, 29, who works in recruitment for Maidstone and Tunbridge Wells NHS Trust, is another of more than 10,400 people in the UK with the genetic condition.

A resident of Debnam Grove in Sittingbourne, she said: “If I moved across the border I could have it - it’s unnecessary and unfair. Before, in hospital, I’ve been in the same room as Orkambi but I wasn’t allowed to take it. It was heartbreaking.”

The Health and Social Committee will hold a hearing on March 7 in an bid to progress the issue after 18 months of discussions.

So far, the petition has nearly 56,000 signatures, but more support is still needed to reach 100,000 by the May 16 deadline.

To sign the petition visit tinyurl.com/KMorkambi