Yahoo News Kent entrepreneur who was told he wouldn't live past five is now 60 and wants to inspire others
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".
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"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. Jonathan, who lives with cystic fibrosis (CF), describes it as a "genetic roll of the dice" that requires him to take a "bucket load of medication" daily, including up to 60,000 tablets a year.
Despite this, he's determined to live life to the fullest and embrace positivity. "I'm a great believer in loving life as best as you can, so I try and have adventures every day," Jonathan shared.
"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."
Guy's and St Thomas' NHS Foundation Trust notes that the Royal Brompton was the pioneer in establishing the first adult CF service in Europe back in 1965, which might have been the first globally.
Jonathan recalls being diagnosed in 1963 after his local GP attended a course discussing "this new illness called cystic fibrosis". He was subsequently transferred to Great Ormond Street Hospital for "excellent" NHS care.
Despite having a relatively "normal childhood", Jonathan faced regular health challenges like "tummy aches" and coughing up significant amounts of phlegm daily. Yet, he and his parents were constantly confronted with grim prognoses about his life expectancy.
"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 recalled.
During his teenage years, Jonathan began experiencing "chest problems" and was subsequently cared for at the London Chest Hospital. He is currently under the care of St Bartholomew's Hospital in London.
Unsure about what his "potential lifespan was going to be", Jonathan left school at 15 to pursue his passion for model-making and started working in London after discovering his talent.
By the time he turned 20, Jonathan noted that doctors "stopped giving predictions" about how long he might live. In 1986, at the age of 23, he launched his first independent model-making business.
Jonathan went on to establish several businesses over the years, managing his condition with medication and physiotherapy. Being self-employed offered him the "flexibility" needed to handle his health.
He believes that maintaining a positive attitude has been instrumental in his journey. "I think having a positive mindset has definitely helped me along the way," he shared.
Despite the grim prognoses throughout his life, Jonathan has outlived expectations. "All my life I've been told that you won't have long, and it has not transpired to be the case."
He remains philosophical about the future, saying, "Now who knows, maybe tomorrow I might pop my clogs, but I don't try to forward think about that."
Jonathan detailed his day-to-day routine as typically involving the use of CF modulators such as Kaftrio, multivitamins and inhalers, coupled with digestive enzymes consumed with every meal, and insulin injections due to his newly diagnosed diabetes. He depicted this treatment regime as a "shadow that follows (him) all the time".
The Cystic Fibrosis Trust reveals, in their preliminary data from the 2024 Your Life and CF report, that most sufferers take more than 30 tablets daily, with some patients reporting a staggering intake of 150 tablets each day.
In the charity's Registry 2022 Annual Data Report, released in September 2023, it was revealed that the median age at death for the 64 people with CF was just 33.
Jonathan praises the vital role of the NHS and specialist CF centres in his "survival", as well as his own positive attitude and determination. However, he stressed that the impact of the condition can vary greatly between individuals.
"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 shared.
"Obviously, it helps if you're compliant with the medication, but that's not the case cracker."
Jonathan, at the age of 40 in 2003, contracted pneumonia which "destroyed most of the top of (his) right lung". This bout marked "the closest (he has) been to death" by allowing cystic fibrosis to gain a strong foothold.
Nevertheless, an intensive exercise regimen bolstered by "pure tenaciousness" enabled Jonathan to enhance his lung capacity and regain health over a two-year period.
"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 revealed.
Jonathan shared that coping with CF is a battle both mentally and physically, admitting it can be "isolating" but believes "it's all about battling against the darkness".
Despite the lack of a cure for his condition, Jonathan has always been determined not to let it define him, striving to "make the best of it" by concentrating on his work and embracing the present.
He candidly expressed that he doesn't dwell "too much about death", yet when his time comes, he aims to exit life exclaiming: "What a life! ".
He reflected: "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, the chief executive of Cystic Fibrosis Trust, commented: "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.
