Challenging only way to
if you will — of cystic fibrosis (CF), the incurable life -threatening genetic condition.
He works as a physical trainer and has biceps as hard as a python that has swallowed a cat. A long scar across his stomach from childhood surgery only enhances his abdomen, which lies so flat it would surely bulge if he ate so much as a crisp.
But vanity has not been Ben’s motivation. An obsessive drive to keep in peak physical condition, armed with the latest research in nutrition and science, goes hand in hand with his personal mission to educate others about CF. The healthier Ben keeps, he believes the less likely he is to succumb to an infection that could land him in hospital.
Hopefully, Ben is the new norm for CF — not the exception. Other inspirational figures include Aaron Brown, a 26-year-old surgeon at York Hospital in England, who says that when he was born, his life expectancy was 30. It is now 40.
THE photograph Ben keeps on his car dashboard shows his mother Karen, now 48, cradling him as a newborn, his limp little legs peeking out from under the blanket. It is a constant reminder, he says, of just how lucky he has been to survive.
The shot, taken hours before he underwent life - saving surgery to remove a bowel blockage, was followed by the devastating diagnosis of CF.
It is caused by a single defective gene and internal organs, especially the lungs and digestive system, become clogged with sticky mucus, resulting i n chronic infections, inflammation of the lungs and digestion problems.
With more than 1,200 CF patients, Ireland has the highest rate of the disease in the world.
The predicted age of survival for a person with CF is in the early to mid30s — although improvements in treatment mean life expectancy is rising all the time.
The image of sufferers as weak children lying flat on cushions as their backs are pummelled to shift mucus has become an old-fashioned one, according to Ben.
He tells of dozens of positive comments left on his Facebook page from parents of small children. ‘You are a light in what has been a very dark time,’ writes one mother whose child has been recently diagnosed.
Given Ben coughed only once after a jog during a fitness session I take with him, it is easy to forget he is sick. 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.
‘I can’t mix with other CF sufferers as we can pass on lung bugs peculiar to those with CF to one another. I don’t go in hot tubs either as they have germs that aren’t good for my lungs,’ he says.
He previously worked as an assistant film director but felt that long working hours without consistent breaks for food were not good for his health.
‘As a personal trainer, I work 20 hours a week,’ he says. ‘In between, I sleep. I get eight hours a night. I don’t go to bars because I don’t drink because of my health.’
Twice- daily hour-long workouts doing cardio are best for his lungs — and high-intensity training. He shrugs off any suggestion that he must have been aware of his condition as a boy.
‘I never felt any different growing up. 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. I NEVER had physiotherapy and I’ve only been back in hospital twice,’ he says. ‘ Once when I was eight to clear a bowel obstruction and the second time was in 2009, when I was 19 and admitted with a lung infection. I lost a stone in three weeks and was left with 60 per cent lung capacity.
‘I was determined to prove doctors wrong after they said I would never recover, so when I got tests results this year showing it was back up to 99 per cent, I cried.’ When Ben did not respond to antibiotics in hospital, instead of allowing his condition to drag him further down, he took himself off to the hospital treadmill.
‘ I started off with a kilometre at a light jog and it nearly killed me,’ he said. ‘I was scared. I’d been used to playing rugby and football.
‘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 with all the pills I need’ — is testament to his parents, Karen, a retired nurse, and John, 49, who is in the armed services.
The family live outside Belfast with Ben, their elder son Jamie, a business consultant, and daughter Lydia, 18.
The couple were living in England before Ben was born but moved to Belfast before the birth. Arriving at a