‘Doctors kept saying I would be lucky to live to adulthood due to cystic fibrosis, now I’m 60 and enjoying every second’

A 60-year-old entrepreneur with cystic fibrosis, who has spent his life being told he does not have “many years to live”, wants to encourage others to “grab” every opportunity after defying expectations.

Jonathan Farrow, a managing director who lives in Medway, Kent, was diagnosed with cystic fibrosis (CF) – a genetic condition which causes sticky mucus to build up in the lungs and digestive system – when he was three months old following “symptomatic testing”.

Given “very little was known” about CF at the time in 1963, Jonathan said his diagnosis was “unheard of” – but his prognosis was “very poor”.

“My parents were told that I probably wouldn’t live past the age of five so just to make the best of it,” Jonathan told PA Real Life.

After Jonathan’s fifth birthday, doctors told his parents he would be “lucky” to live to 10 and then his late teens – but after he reached the age of 20, they “stopped giving predictions”.

Jonathan, who is a qualified field archery coach, went on to set up multiple companies and get married – although he later got divorced, and now enjoys running his supercar club and spending time at his holiday home in Ashford with his 55-year-old partner Donna.

His parents William and Iris even helped to launch the charity Cystic Fibrosis Trust, which turned 60 this year.

While Jonathan said living with CF is a “genetic roll of the dice” and means he has to take a “bucket load of medication” every day, including up to 60,000 tablets a year, he wants to enjoy his life every single day and spread positivity.

“I’m a great believer in loving life as best as you can, so I try and have adventures every day,” he said.

“You really need to go and enjoy life as best you can, every day, because tomorrow isn’t promised to anyone – and you’re made very aware of that with cystic fibrosis.

“Having lived with that all the time throughout my entire life, with the medical profession telling me you haven’t got many years to live, it focuses your mind – if you’re going to do it, you need to go and do it now.”

According to Guy’s and St Thomas’ NHS Foundation Trust, it was only in 1965 that the Royal Brompton established the first adult CF service in Europe, and possibly anywhere in the world.

Jonathan said he was only diagnosed in 1963 as his local GP had just been on a course where they talked about “this new illness called cystic fibrosis”, and he was then transferred to Great Ormond Street Hospital, where he received “excellent” NHS care.

Jonathan said he had a relatively “normal childhood”, despite experiencing regular “tummy aches” and coughing up half a cup of phlegm every day, but he and his parents were repeatedly told he would not live past certain ages.

“When I got to the age of five, the doctors were telling my parents, ‘Well, he’s lived to the age of five, it would be very lucky if he lived to the age of 10’, and when I got to the age of 10, they said, ‘It’s very unlikely he’ll live past his late teens’,” Jonathan said.

In his teenage years, when he started to experience “chest problems”, Jonathan was transferred to the London Chest Hospital, but he is now under the care of St Bartholomew’s Hospital in London.

At this point, he was not certain what his “potential lifespan was going to be”, so after discovering a passion for model-making, he left school aged 15 and started working in London.

When he reached the age of 20, he said doctors “stopped giving predictions” on his life expectancy and, in 1986, aged 23, he set up his first solo trading model-making company.

Over the following years, he set up several other companies and was able to manage the condition with medication and physiotherapy, and he said being self-employed gave him the “flexibility” to do this.

“I think having a positive mindset has definitely helped me along the way,” he said.

“All my life I’ve been told that you won’t have long, and it has not transpired to be the case.

“Now who knows, maybe tomorrow I might pop my clogs, but I don’t try to forward think about that.”

Jonathan said a typical day involves taking CF modulators such as Kaftrio, multivitamins and inhalers, along with digestive enzymes with every meal and insulin due to his recent diabetes diagnosis, and he described this regime as a “shadow that follows (him) all the time”.

According to Cystic Fibrosis Trust’s preliminary data from its 2024 Your Life and CF report, most people with CF take more than 30 tablets a day, with the most tablets reported per day being 150.

In the charity’s Registry 2022 Annual Data Report, published in September 2023, the median age of the 64 people with CF who died was 33.

Jonathan has credited the NHS and specialist CF centres for his “survival”, along with his positivity and tenacity, but ultimately he said the condition affects each person differently.

“There is no answer. Over the years, I’ve found that no matter what rationale you try and use, it’s just a genetic roll of the dice. Some people do well with cystic fibrosis, some people don’t,” he said.

“Obviously, it helps if you’re compliant with the medication, but that’s not the case cracker.”

In 2003, aged 40, Jonathan developed pneumonia, which “destroyed most of the top of (his) right lung” – and this was “the closest (he has) been to death” with his cystic fibrosis.

With an intensive exercise regime and “pure tenaciousness”, however, Jonathan managed to increase his lung capacity and recover within two years.

“When I went to hospital with pneumonia, the doctor told me my oxygen levels were the same as a man standing at the top of Everest,” he said.

Jonathan explained that living with CF is both a mental and physical challenge, and it has been “isolating” at times, but he thinks “it’s all about battling against the darkness”.

He has never wanted the condition, which currently has no cure, to be a “defining part” of his life and he has always tried to “make the best of it” by focusing on his work and living in the moment.

Jonathan said he never thinks “too much about death” – but when the time comes, he hopes to leave this world screaming: “What a life!”

He said: “I never wanted to be that guy that got to the end and crept over the line, thinking, ‘I wish I’d done this, I wish I’d done that’.

“I want to be that guy that goes screaming over the line in the end, totally wrecked, and going, ‘Whoa, what a life!’ Because that’s the way it’s got to be – not just for people with CF, but for everyone.

“Everyone should try and realise what a gift life is, not just those with a serious illness like mine.”

David Ramsden, chief executive of Cystic Fibrosis Trust, added: “Our latest data is showing that although in the last 60 years we’ve seen amazing breakthroughs in treatment and care, a third of people with CF are living in daily fear of their condition.

“As we’re highlighting today with the launch of our new campaign, there really is ‘no day’ off from the life-long, life-limiting condition with people spending hours on their daily treatments.

“Despite recent advances in CF care, we know we still have hard work ahead of us before everyone with CF can look forward to a life without limits.”

For more information or support, visit the Cystic Fibrosis Trust’s website here: cysticfibrosis.org.uk.