JOSH’S STORY
LIVELY 12-year-old Josh Beviere was admitted to hospital for a fortnight’s stay last night to treat his latest infection.
Yet his parents Jeni, 42, and Andy, 43, believe Orkambi could transform his condition.
Jeni said: “We are having to take Josh into hospital to have his latest CF-unfriendly bug zapped with intravenous antibiotics.
“This is what life can be like – but if Orkambi and other drugs were made available, maybe that would not be his future after all?
“If Orkambi can stop all the mucus building up in his lungs, and the bugs and bacteria damaging his lungs, that would be a massive breakthrough.
“That is why it is so vital for the drug to made available – and so cruel that at the moment it is not.”
Josh was nine when diagnosed with cystic fibrosis. He was born before the “heel-pick” tests for the condition were brought in for all newborn babies.
The secondary school boy has to take a multitude of drugs every day to help his pancreas digest his food and stop dangerous infections.
Jeni, of Tunbridge Wells, Kent, told us: “It would be horrific for Josh and countless others if it is not released.
“It would ‘stop the clock’ on Josh’s symptoms and help ease his life. The whole situation is crazy.
“We are trying to treat Josh with tablets, as well as a healthy diet of high protein, low-sugar and to many he just looks a normal child.
“That is why sometimes cystic fibrosis is described as the invisible condition.”
Describing the problems cystic fibrosis brings Jeni said: “Getting exercise is very important to keeping good lung function.
“However if you get a bug in the lungs it can cause damage so we also have to be very careful where he goes and what he does too.
“For example Josh cannot meet other children with cystic fibrosis face-to-face, due to the danger of swapping potential bugs.”