If this is present, the second stage is a genetic test, then a sweat test as there are high levels of salt present in those with CF.’ However, it has only been since 2007, after a campaign by the Cystic Fibrosis Trust, that newborn babies in the British mainland have been screened at birth, so Ben’s mother doubts whether he would have survived if he had been born in Dorset.
‘It was only after the diagnosis,’ says Karen, ‘that my father said he must have been the carrier as his brother had three children with CF who later died.’ Although a carrier, Karen has no symptoms of the disease.
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I lost a stone in three weeks and was left with 60 per cent lung capacity. Doctors didn’t advise me to exercise – they told me not to go too hard but I felt if I wasn’t challenging myself, I wasn’t going to get better and slowly I built up my fitness.’ The fact that Ben fails to identify anything he felt held him back growing up – ‘apart from taking a gap year as I couldn’t travel round with all the pills I need’ – is testament to his parents, Karen, a retired nurse, and John, 49, who is in the Services.
‘I started off with a kilometre at a light jog and it nearly killed me,’ he said. The family live outside Belfast with Ben, their elder son Jamie, a business consultant, and daughter Lydia, 18.But look beyond his mean triceps and signs of his CF do become apparent.He has been prescribed an antibiotic three times a week for a chest infection. When I was no age, my dad used to make me do press-ups to give me good posture so my breathing would be clearer and I always found exercise made me feel better.It is caused by a single defective gene and internal organs, especially the lungs and digestive system, become clogged with sticky mucus, resulting in chronic infections, inflammation of the lungs and digestion problems.He tells of dozens of positive comments left on his Facebook page from parents of small children.The couple were living in Dorset before Ben was born but moved to Belfast before the birth.