Man to cycle 530 kilometres to save next generation of cystic fibrosis sufferers

Devoted dad Bob Clarke is cycling 530 kilometres from Vietnam’s Ho Chi Minh To Angkor Wat in Cambodia … to save cystic fibrosis patients like his treasured daughter. 

And CF-sufferer Sophie Clarke, 29, has told the Daily Express how her dad is a “hero” after raising over £32,000 over the years for the Cystic Fibrosis Trust charity with a series of tough challenges. 

Now CF sufferers can take NHS wonder drugs like Kaftrio to alleviate the worst symptoms of the disease – but when Sophie was growing up there were none – and 12 years ago aged 17 she needed a double lung transplant.

Over the years father-of-two Bob, 61, has vowed to help the generation of sufferers and in September he’s cycling over tough terrain in 12 days from Vietnam to Cambodia, to raise over £3,000 for the CF Trust.

Bob, of Tunbridge Wells, Kent, told us: “When Sophie was born it was a time when there were no treatments to help with any of the nasty symptoms of CF, like sticky mucus in the lungs. 

“No there are marvellous drugs to help sufferers like Kaftrio but when Sophie was young there was nothing and doctors were saying that children with CF would only like to around 30 years old. 

“Twelve years ago Sophie had new lungs and that’s held back the clock for her but on average transplanted lungs stay healthy for around eight-and-a-half years so she is doing exceptionally well looking after them. 

“But she is also having to take powerful anti-rejection drugs since the transplant and they can negatively affect her body in other ways. She also has CF-related diabetes. 

“But her life has been remarkable in so many ways and when she was diagnosed as a child we never thought she’f grown up to be working in an office and living a full life.”

Sophie, who lives in Burwash, East Sussex, works for AXA as an international advisor and is living a happy and busy life with boyfriend George Wood, 30. 

But at just three months old, Sophie was diagnosed with CF, a genetic disorder which affects mostly the lungs, along with the pancreas, liver, kidneys, and intestine. 

Sophie suffered from breathing difficulties and frequent lung infections which caused her to cough up mucus and her childhood consisted of daily physiotherapy, dozens of pills and intravenous antibiotics. 

Her condition gradually worsened over time and, by 16 years old, Sophie was wheelchair bound and suffering from debilitating chest infections every month which left her needing regular hospital treatment.

She was just 17 when she became one of Britain’s youngest double-lung transplant recipients after doctors gave her just two months to live.

She said of her ill health at that time: “My lung capacity was at just 15 per cent. I needed round-the-clock help just to breathe. My future was looking very bleak. 

“When I was 14, I started to get really severe chest infections, which left me with serious, permanent damage in my lungs. Eventually, things got more and more severe and there was less and less I could do.” 

Sophie was transferred to Harefield Hospital, in Uxbridge, which specialises in heart and lung care, following a consultation at King’s College Hospital in London. 

After she agreed to the prospect of a lung transplant, she was given the green light for the operation following a three-day assessment. 

But it was an agonising four months before she received the phone call to say she had a match, during which time her condition significantly worsened.

Now with her new lungs Sophie still takes 35 tablets a day, including antibiotics and anti-inflammatories, to try and stop her body from rejecting the lung transplant, but she no longer needs physiotherapy.

She also suffers from CF-related diabetes, which she takes insulin for and is currently in hospital this week taking anti-biotics after catching a nasty chest infection.

Upbeat Sophie told us: “My dad is a total hero to me. He’s amazing. Both of us want to make sure the next generation of CF sufferers have a happier, healthier future.

“The anti-rejection drugs I’m on are so strong they can attack the body too, like a mild chemotherapy and when I first started on them I lost some of my hair and got bad tremors in my hands.

“But they are a necessary evil as otherwise my body would reject the lungs which have saved my life.”

Reach PLC technical delivery manager Bob said: “Like all CF Kids Sophie had a high fat high sugar diet to combat this but was then diagnosed with CF Type Diabetes in her mid teens that made life even more complicated. 

“Balancing insulin doses when you need a high sugar diet is no mean feat. Throughout this Sophie has always been positive and happy – something we never take for granted. 

“Sophie is one tough cookie. She made a remarkable recovery. The NHS is a truly remarkable organisation and we can never thank the donor and her family enough.” 

Speaking about his upcoming challenge he said: “I have been meaning to try this event for years and it is finally time to conqueror it. 

“It’s like doing a London to Brighton bike ride every day over unpredictable terrain and in the heat and humidity. 

“But I’m so excited about doing it and fundraising for the CF Truist is a very worthy cause. I’m paying for the support and to do the trip out of my own pocket so that every penny raised goes straight to charity.”

Beverly Burnham-Jones, Head of Community Giving and Events at Cystic Fibrosis Trust, told the Daily Express: “We’re incredibly grateful for Bob’s continued dedication to raising money for Cystic Fibrosis Trust.

“It’s thanks to our amazing fundraisers that we’re able to keep doing the important work we do both providing support and information and funding cutting edge research.

“His latest challenge is his biggest one yet, and we wish him the best of luck on this incredible cycle ride.”

* To support Bob on his fundraiser please visit https://www.justgiving.com/page/bob-clarke-1706799463637

Or to find out more about cystic fibrosis visit https://www.cysticfibrosis.org.uk