A five year-old with cystic fibrosis is finally “living his childhood” as his health soars … thanks to a wonder drug the Daily Express helped fight for.
Last year anxious mum Chloe Browne, 30, was pleading for Kaftrio to help her sickly son Jesse, who was constantly in and out of hospital with chest infections caused by his CF as sticky mucus clogged up his lungs.
Two months ago Jesse, of Ingatestone, Essex, finally got the drug and within 24 hours suddenly stopped coughing while amazed parents Chloe and Ben Browne, 35, saw his appetite grow.
Now Chloe’s told us how Kaftrio’s transformed his once ailing health – even miraculously reversing years of damage to his pancreas so he no longer needs to take enzyme tablets with every meal to digest his food.
Proud Jesse Browne with dad Ben after 2024 London Marathon (Image: handout)
Thrilled mum-of-two Chloe explained: “They call Kaftrio a miracle drug and it really is that for Jesse. We cannot believe the boy he has transformed into, in just nine weeks!
“He no longer seems to be constantly in pain, or have no appetite and feel down and low – instead he is living the childhood we dreamed he would have from the day he was born.”
Chloe and construction firm worker Ben were left shattered five years ago when told by Great Ormond Street Hospital (GOSH) that newborn Jesse had genetic disease cystic fibrosis (CF).
There are just around 11,000 people in the UK with CF, just 100,000 in the whole world, and a decade ago there were no treatments to alleviate symptoms invented with many sufferers not living beyond the age of 30
US pharmaceutical firm Vertex has since developed a range of CF drugs – with Kaftrio their most effective – and in 2020 the Daily Express helped the fight to get all the treatments on the NHS.
Jesse Browne rides his scooter to keep fit (Image: handout)
Until last November Kaftrio was only available to NHS patients aged six and over but then it was granted a UK licence for kids aged two and over – and after waiting for some tests, Jesse finally started taking it nine weeks ago.
Yet although they are fully licensed in the UK, families are still waiting for the Vertex drugs to be given the permanent green light for long-term NHS use by The National Institute for Health and Care Excellence (NICE).
This long-awaited NICE ruling is currently on hold as the NHS and Vertex try to negotiate a pricing deal that NICE can accept makes the drugs cost-effective for taxpayers.
Meanwhile Jesse has now been able to switch to Kaftrio from Vertex gateway drug Orkambi – and already Chloe has seen a remarkable transformation in her son.
Jesse after (left) and before (right) starting on wonder drug kaftrio (Image: handout)
She told us: “You would not recognise Jesse from three months ago, he’s definitely grown and is flourishing so well.
“He used to struggle with his bowels as CF affects the digestive system and pancreas a lot and he would be in such pain –
Plus he was always coughing from all the mucus in his lungs.
“Over the years he’s been in and out of GOSH with nasty lung bugs meaning he has to go on powerful, intravenous anti-biotics to beat the infection. The hospital was like a second home to him.
“But after 24 hours on Kaftrio we suddenly realised he wasn’t coughing anymore. It was amazing.
“Now he has a really hearty appetite and doesn’t even need to take the creon tablets that replace the enzymes his CF-affected pancreas does not produce to help digest food.
“He used to have to take creon every single time he ate anything but doctors did tests and said he doesn’t need them anymore as Kaftrio and boosted his pancreas.
“He is always hungry which is great as he would struggle to eat before – this evening he had dinner and then ate three sandwiches before going to bed!”
Jesse thrilled to see himself in the Daily Express newspaper! (Image: handout)
Jesse with mum Chloe and dad Ben (Image: handout)
Last weekend dad Ben ran the London Marathon in four hours and 35 minutes to fundraise for the Cystic Fibrosis Trust charity – and on Thursday this week proud Jesse took a picture into school that he had drawn of his dad running.
Previously to explain to the pupils in his reception class, Jesse had led a special PE lesson to show them all the different exercises he has to do each day to keep his lungs clear and fit.
Chloe added: “Jesse has always been an inspiration to us. I think he will be an even bigger one as he grows up – which he will do now thanks to Kaftrio.
“The new drug isn’t a cure but it’s the closest thing to a cure. It’s changed our life, the dark cloud has definitely gone from above. We can just see Jesse blossoming more and more every day.
“He’s now living the childhood he should have lived a long time ago… the basics of life.”
* To donate to Ben’s London Marathon fundraising for the CF Trust, visit – https://2024tcslondonmarathon.enthuse.com/pf/benjamin-browne