Scots mum convinced she would die before Christmas makes miracle recovery thanks to new cystic fibrosis wonder drug
A MUM who was convinced she'd die of cystic fibrosis before Christmas says a miracle drug has transformed her life.
Cheryl Dester, 33, is one of the first patients to be prescribed Kaftrio since it was made available on the NHS in August.
“I was waiting to die, basically,” said Cheryl, who was on oxygen 24-hours a day as her lung function fell to just 13 per cent.
“I never thought I would still be here. I had given up hope to be honest, I didn’t think I would see my daughter’s first day at school, never mind Christmas.”
After just 10 weeks on the drug she’s being taken off the lung transplant list, her lung function has climbed to 75 per cent and she’s planning to hike 1,700 feet to the top of Bennachie for charity this weekend.
Cheryl, from Blackburn, Aberdeen, thought she’d never walk her five-year-old daughter Darcey to her first day of school and was facing the very real prospect of not living to see Christmas.
Her life hung in the balance, as friends and family feared the worst.
She old was critically ill with cystic fibrosis, a genetic disease that kills half of sufferers before they reach the age of 40.
With her lungs shutting down she was on the transplant list when, in August, she was offered Kaftrio, an apparent “miracle drug”, on compassionate grounds.
The hope was it could boost her lung function, hovering at just 13%, until a donor could be found.
However, it has done so much more – giving her new hope, returning her mobility and, against all the odds, meaning she can now think about returning to work.
Cystic fibrosis is an incurable illness that causes the body to produce thick, sticky mucus that builds up in the lungs and digestive system.
In fact, daily walks to Kinellar Primary School with five-year-old daughter Darcey and strolls with sausage dog Sofia are now the norm as the family makes the most of her new-found freedom and fitness.
It was two years ago that the Robert Gordon University graduate’s health took a severe turn for the worse, leaving her needing oxygen 24-hours a day and unable to care for Darcey.
But until her early thirties, the former Peterhead Academy pupil had defied expectations by not just surviving her childhood but thriving through it.
“Growing up, I didn’t know any better,” she said.
“My family encouraged me to do as much as I could and keep as active as possible.
“I swam for Scotland’s paralympic swimming team, did highland dancing and was a member of the Sea Cadets.
“I was always out and about doing things and never wrapped in cotton wool.
“I graduated as a nurse and travelled the world before settling down.”
She married her partner of seven years, Barry Dester, 34, in 2016, one year after they welcomed Darcey into the world.
Together they continued to defy expectations, leading a relatively normal life, as far as health was concerned, until two years ago when Mrs Dester’s condition took a terrifying turn for the worse.
She said her health “just dived off a cliff” and her cystic fibrosis team at NHS Grampian had to deliver more than one tough piece of news.
Mrs Dester said: “I was on 24-hour oxygen in the end. I couldn’t even read Darcey a bedtime story without erupting into coughing fits.
“Barry works offshore, and whenever he was at home he had to do everything in the house.
“When he was away I had to get my mum and dad to come and stay or I would move in with them.
“I felt I was being robbed of being a mum for all these years because I couldn’t do much with Darcey.
“I was bed-ridden some days and just unable to walk and sometimes talk.”
Her already agonising time on the lung transplant waiting list was made even more painful when the coronavirus lockdown hit in March, throwing the NHS into chaos and drastically reducing the number of transplants able to take place.
It was at this point the popular nurse’s friends began to prepare themselves for the prospect of never seeing her again in person – convinced she would die before shielding of the vulnerable ceased.
Then she was prescribed Kaftrio.
“They were hoping the drug would keep me going until I got my transplant,” she said.
“But it’s completely turned everything on its head.
“I am able to walk my daughter to school, I go to gym classes and have gone from being on oxygen and a peg feed to preparing to go back to work.
“I had to give up my job because I was so ill and I can’t wait to get back to a new post at Albyn Hospital.
“I began the drug on August 28, and will stick with it until it’s deemed I need new lungs.
“But I am hoping that point is many moons away, as even once a donor is found there are a lot of complications that come with it.
“I don’t know how long I am going to feel this good, so I’m trying to do as much as I can.
“I’m making the most of it, even more than I did before.
“I am back to being a mum, a wife to my amazing husband, a friend and a daughter and grand-daughter to my godsend of a family.”
Tributes paid to Edinburgh cystic fibrosis warrior, 24, who died after lifelong battle with condition
Kaftrio, the so-called “miracle drug” for cystic fibrosis, has so far proved to be life-transforming for 90% of patients with the illness.
The drug, produced by Vertex Pharmaceuticals, is a medicine that tackles the underlying causes of the disease by helping the lungs work more effectively.
It was first offered for free by the NHS in Scotland in August, meaning patients like Cheryl Dester are among the first in Europe to benefit.
Kaftrio is being hailed as a “wonder drug” for the genetic condition – which shortens lives and affects around 900 people in Scotland – and is said to help sufferers lead longer and healthier lives.
In 2017, the 132 people with cystic fibrosis who died had a median age of just 31.
Clinical trials of Kaftrio have proven the treatment significantly improves lung function in people with the condition.
Campaigners are hoping to see a similar breakthrough soon for the 10% who cannot be offered the drug.
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David Ramsden, chief executive of the Cystic Fibrosis Trust, said Kaftrio coming on to the market was a “big step in a long campaign for access to lifesaving drugs”.
He said: “This new drug will truly save lives.
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“While this is a special moment for people with cystic fibrosis, there is more to do and we will not stop until everyone with cystic fibrosis across the UK has access to life-saving drugs.”
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