While Charlotte Bones’ friends were excitedly booking weddings and starting families, she was planning for her funeral.
She was born with cystic fibrosis, and her parents were told she would be unlikely to live past 30.
And, during a devastating period of ill health during the pandemic, doctors advised Charlotte, then 27, to start writing her will.
But thanks to some “wonder drugs” and lots of exercise, she has defied the odds to carry out some amazing feats – including climbing Ben Nevis, the UK’s highest mountain.
And now Charlotte, 29, cannot wait to celebrate her milestone birthday with family and friends in April.
She says: “I’ve always known my time is likely to be limited but when I deteriorated two years ago, I just wasn’t ready to die yet.
“Doctors told me my only chance of survival was a double lung transplant, but the operation got called off and I felt terrified.
“It was awful. I felt very isolated and alone with my thoughts.
“But with the help of a new drug and lots of exercise, I have transformed my life.”
Charlotte was diagnosed with CF – a genetic condition where the lungs and digestive system become clogged with thick, sticky mucus – when she was just eight months old.
Around 10,800 people in the UK live with the progressive disease.
Charlotte sat her GCSEs in hospital but despite her health challenges, was well enough to hold down a full-time job in HR.
In April 2020, however, she was taken to hospital after vomiting blood and struggling to move her right side.
Two weeks later, her mum found her unconscious and covered in blood again. She had suffered a major haemorrhage in her lungs, which were full of tiny holes due to CF, and also had a stroke.
“That was when I was told I needed a double lung transplant as quickly as possible,” Charlotte recalls. “I was alone in hospital because of Covid restrictions so had to call my mum to tell her.
“The doctors told me I should make a will and ensure my family knew my wishes, should anything happen to me.
“It was unthinkable to be 27 and dealing with that.”
In July 2020, Charlotte, whose weight plummeted to just 5st, received a call to say donor lungs had become available.
But after having her pre-op tests, Charlotte was told she had sticky blood syndrome and a problem with her liver. “It meant I probably would not survive a transplant so I was taken off the list,” she says.
“It had been my last hope but I realised that I wasn’t ready to die. It wasn’t my time.”
Doctors put Charlotte on CF “wonder drug” Kaftrio and she was told to gain at least 3st.
Her uncle also bought her an exercise bike to help build her strength – and by cycling in front of the telly at home, Charlotte incr-eased her lung function by 40%. She also went back to work and started going to the gym five times a week. And in September, Charlotte was fit enough to climb Ben Nevis with by her brother, six cousins and best friend, raising £12,000 for the Cystic Fibrosis Trust.
“I’d always wanted to complete a charity event like that,” she says. “It took me eight hours as I am not very steady on my feet but I feel like nothing is unreachable now.”
The charity challenge was one of many things on Charlotte’s bucket list. She has also kayaked the Exeter Quays, run 5km for charity, and will be flying to Argentina in February. Charlotte, of north-west London, says: “Thirty was the life expectancy for someone with CF when I was born, but my plan is to have a long and happy life.
“To be told to write a will at 27 shook me to the core, but I’m still here and enjoying my life – and I don’t take it for granted.”
Charlotte has been supported by the Cystic Fibrosis Trust. Find out more at cysticfibrosis.org.uk
