EVERY day Tommy Welch gets up, takes his cocktail of 40 or so tablets and quietly hopes that today won’t be the day he catches the kind of chest bug that could kill him.
“I could be one bad chest infection away from being dead,” he says, matter of fact. “Yes, it’s scary. It makes you really think and it’s not easy to get through it.
“All I can do is live for the day.”
He’s only 25, at an age when life should be all about the positive things ahead – getting married, having children, enjoying himself.
But Tommy was born unlucky, with a faulty gene that has left him with a condition that he’s known since childhood will almost certainly shorten his life.
That might be all too much for some. Instead, Tommy is remarkably accepting, with an inspirational spirit that later this month will see him defy a fear of heights to throw himself off the top of the South Stand at Murrayfield Stadium and zip slide 200m across the pitch and right through the rugby posts.
It’ll be a thrilling spin across the hallowed turf, all the more admirable because the curse of cystic fibrosis (CF) has left Tommy not only with dramatically reduced lung function, but with a string of other debilitating health conditions.
Indeed, it’s a wonder he’s here at all. He was just hours old, born eight weeks early, when his parents were told he needed major life-saving surgery. Tiny and fragile, he survived only for them to learn that he was one of the five babies born every week with CF.
As they reeled from that news, doctors warned that chest infections and serious complications meant Tommy would be lucky to make it to his second birthday.
“I’ve had a couple of close calls,” he says. “It all puts life into perspective. It’s why a lot of CF patients live for the day, we never know what is around the corner.”
Doctors had already suspected the bowel disorder which led to his premature arrival was linked to the genetic condition when he was born. A simple sweat test at six weeks old proved it.
Unknown to them, his parents were both carriers of the faulty CF gene, giving them a one-in-four chance of producing a child with the condition. True to the statistics, all three of Tommy’s siblings – Jonathan, 30, Katy, 28, and Rebecca, 22 – are fine.
“My bowels had burst before I was born,” explains Tommy, who lives with girlfriend Lauren McCallum, 19, in Stenhouse. “They got clogged up with nutrients from my mum – it’s something that can happen when you have CF – and I wasn’t expected to survive.”
Even now problems with his bowel mean that Tommy has to take special drugs every time he eats to help his digestive system cope. He also has CF-related diabetes that requires daily insulin, bone condition osteoporosis and liver problems which could eventually impact so severely that he could need a liver transplant.
It’s all on top of a seriously depleted lung function – his lungs only operate to 51 per cent of normal capacity – and a constant risk that if he were to fall ill with a chest infection, it could well prove fatal.
It’s why for five months, between October and February, he is almost permanently fed intravenous drugs to help fight infections and every day he does long sessions of breathing exercises.
The odds may have been stacked against him, but despite missing large chunks of school growing up in Lochgilphead, Tommy graduated from Stirling University. His plan to work as a teacher, however, was scrapped when he realised the pressures of the job took too great a toll on his health and he now works for ReAct as an employability adviser, helping jobless people find suitable work.
Yet while he’s determined to pursue a “normal” life, he’s aware that while around half of CF patients currently live to 41, life expectancy is shortened.
“Four or five people I got to know well who all had cystic fibrosis have passed away in the past couple of years,” he says. “They ranged from just 15 years old to their early 20s.
“How do I handle that? I just hold on to the good memories of them. I know they are looking down on me, looking after me.
“I don’t ever feel angry about what’s happened to me. I’ve had a terrific life and I’ve met some terrific people who, if not for CF, I’d never have met.”
The potential problems ahead are terrifying. A chest infection which puts too much pressure on his lungs is just one. Further ahead, his lungs could become so wasted that he could need a lung transplant.
His enlarged liver is at risk of potential failure but also ruled him out of taking part in recent gene therapy trials because of the possible risks.
“There’s research going on all the time,” he adds. “Hopefully gene therapy could lead to 15 to 18 per cent better lung function which would be amazing.”
Girlfriend Lauren says: “He really is an inspiration, he stays very upbeat. Sometimes behind closed doors things get on top of him but that’s not very often.”
Lauren, a nursing assistant, met Tommy while both were at school. She says they know what the future might hold but are determined not to let it stop them planning ahead. “We just live for the moment,” she says. “Of course I worry about him, but anyone could go out tomorrow and get hit by a bus. None of us knows what’s ahead.”
• Tommy Welch is raising money for the Cystic Fibrosis Trust. To sponsor his zip slide at Murrayfield, go to www.justgiving.com/Thomas-Welch2. To take part in the fundraising event on Easter Sunday, March 31, visit www.cftrust.org.uk/help/events/mzip, call 0300 373 1100 or e-mail email@example.com
TWO MILLION CARRY FAULTY GENE
CYSTIC fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases.
CF is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body. It affects a number of organs, most commonly the lungs, and can lead to troublesome coughs, chest infections, digestive problems and poor weight gain.
More than two million people in the UK carry the faulty gene that causes CF. If two carriers have a child, the baby has a one-in-four chance of having CF.
Currently half of the CF population will live past 41, and improvements in treatments mean a baby born today is expected to live even longer.
Former prime minister Gordon Brown and wife Sarah confirmed in 2006 that their son, James, has CF.
There is currently no cure for CF.