A five-year-old boy 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, pleaded for Kaftrio to help her sick son Jesse, who was constantly in and out of hospital with chest infections caused by his CF, as mucus sticky stuff clogged his lungs.
Two months ago, Jesse, from Ingatestone, Essex, finally took the drug and within 24 hours suddenly stopped coughing as shocked parents Chloe and Ben Browne, 35, watched his appetite increase.
Now Chloe has told us how Kaftrio transformed her previously poor health, even miraculously reversing years of damage to her pancreas, so she no longer needs to take enzyme tablets with every meal to digest her food.
Proud Jesse Browne with dad Ben after the 2024 London Marathon (Image: brochure)
Excited mum-of-two Chloe explained: “They call Kaftrio a miracle drug and it really is for Jesse. We can’t believe what a boy he’s turned into, in just nine weeks!
“It looks like he’s no longer in constant pain, hungry and down and depressed, he’s living the childhood we dreamed he’d have since the day he was born.”
Chloe and construction company worker Ben were left devastated five years ago when Great Ormond Street Hospital (GOSH) said newborn Jesse had the genetic disease cystic fibrosis (CF).
There are only around 11,000 people in the UK with CF, just 100,000 worldwide, and a decade ago there were no treatments to relieve the symptoms invented with many sufferers not living past their 30s.
US pharmaceutical company Vertex has since developed a range of CF drugs, with Kaftrio the most effective, and in 2020 the Daily Express supported the fight to get all treatments on the NHS.
Jesse Browne rides his scooter to keep fit (Image: brochure)
Until last November, Kaftrio was only available to NHS patients aged six and over, but it was then granted a UK license for children aged two and over, and after waiting for some trials, Jesse finally started taking it nine weeks ago.
However, despite being fully licensed in the UK, families are still waiting for the National Institute for Health and Care Excellence (NICE) to give the Vertex drugs a permanent green light for use long term of the NHS.
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 the Vertex Gateway drug Orkambi, and Chloe has already seen a remarkable transformation in her son.
Jesse after (left) and before (right) starting the wonder drug kaftrio (Image: brochure)
She told us: “I wouldn’t recognize Jesse from three months ago, he’s definitely grown and flourishing so well.
“I used to struggle with my bowels as CF affects the digestive system and pancreas a lot and I would be in so much pain…
Also, he was always coughing up all the mucus in his lungs.
“Over the years he has been in and out of GOSH with nasty lung bugs, which means he has to take strong, intravenous antibiotics to beat the infection. The hospital was like a second home to him.
“But after 24 hours on Kaftrio we suddenly realized he wasn’t coughing anymore. It was amazing.
“He now has a very hearty appetite and doesn’t even need to take the Creon tablets that replace the enzymes his CF-affected pancreas doesn’t produce to help digest food.
“He used to have to take Creon every time he ate anything, but the doctors did tests and said he no longer needed it as Kaftrio enlarged his pancreas.
“He’s always hungry which is great as he used to struggle to eat – he had dinner tonight and then three sandwiches before bed!”
Jesse was thrilled to see himself in the Daily Express newspaper! (Image: brochure)
Jesse with mum Chloe and dad Ben (Image: brochure)
Last weekend dad Ben ran the London Marathon in four hours and 35 minutes to raise funds for the Cystic Fibrosis Trust charity, and on Thursday this week Jesse proudly posed for a photo to the school he had drawn of his father running.
Earlier, to explain to the students in his reception class, Jesse had led a special PE lesson to show them all the different exercises he has to do every day to keep his lungs clear and fit.
Chloe added: “Jesse has always been an inspiration to us. I think he will be even bigger as he grows up, which he will now thanks to Kaftrio.
“The new drug is not a cure, but it is the closest thing to a cure. It has changed our lives, the dark cloud is gone from above for good. We can only see Jesse blossoming more and more every day.
“He is now living the childhood he should have lived a long time ago…the fundamentals of life.”
* To donate to Ben’s London Marathon fundraiser for the CF Trust visit – https://2024tcslondonmarathon.enthuse.com/pf/benjamin-browne
#Life #transformed…all #drug
Image Source : www.express.co.uk