'I don't want to regret anything': CF sufferers on seizing the extra days thanks to advances in treatment
David is now 25 and well on his way to achieving a once-impossible future: becoming potentially the country’s first pro-golfer with Ireland's most common genetically explicit disease.
A young Cork mechanic has quit his day job to follow his dream of becoming a professional golfer despite having Cystic Fibrosis (CF).
Just over a year ago David Howard plucked up the courage to play golf full time and give his dream a go. “I am pursuing a career in golf at the moment which is scary and exciting at the same time,” he told the
“I started getting good three or four years ago and thought I might as well give it a go. I don’t want to regret anything down the line,” he said.
It would have been unthinkable when he was diagnosed with CF in 2007 at the relatively late age of seven. For almost a century the genetic disease all but guaranteed an early death. It causes thick mucus to clog your lungs and coat your digestive system and other organs.
Today life-changing advances in modular drug therapy have allowed many people with CF – but not all - to breathe freely, run, play and hopefully enjoy an average life span.
David is now 25 and well on his way to achieving a once-impossible future: becoming potentially the country’s first pro-golfer with Ireland's most common genetically inherited disease.
He started golfing with his Dad, John, and his two older brothers Michael and Jack, neither of whom have CF, the same year he was diagnosed. “No one in the family had it so it was a big shock,” said David. “When you’re younger you wonder ‘why me?’ and feel sorry for yourself, but it is what it is. I try to take the positives out of it and keep going.”
His decision to quit his job as a mechanic for Audi to follow his dream last year was influenced by living with such a condition, by a mindset developed from “not knowing from a young age how long you’re going to live”.
“We need to keep the research coming and the advancements in medication. Six or seven years ago, you couldn't see us getting to this stage we’re at now. It's exciting to see how far we'll come in the next five to 10 years with the advancement of medications, compared to years ago, when we had no hope,” said David.
If he succeeds David could be the country’s first pro-golfer with CF. After his first season as a full-time amateur, the Ringaskiddy native finished last year ranked as No.1 in Munster and tenth in Ireland. He's already played in Spain and Portugal this year, accompanied by his girlfriend Gabbi who occasionally caddies for him.
The big dream is to one day turn professional but the Fota Island Golf Club man needs sponsors first to allow him to continue playing full time.
His golfing hero is Pádraig Harrington, while in life, his heroes include his parents John and Eithna and his 93-year-old granny Patsy who has been “a huge support” in between regular cups of tea.
“Something was off”. Cork native Jill Dorgan knew “something was off” when her second son Scott was born in 2019.
“I knew something was wrong. And I kept asking people because I could see something was different about him. And I was just told he probably had an infection,” Jill told the .
Scott had a heel prick test at three weeks old and when the results came back, the classic ‘sweat test’ was carried out to confirm their suspicions. CF affects the balance of salt and water in the body, resulting in sweat that is unusually salty.
When the call came through confirming Scott indeed had CF, Jill did what anyone told of a strange disease does: “I didn't know what it was. I actually had never heard of it. When you google it, it's catastrophic. You start to imagine your child's future and you imagine the worst.”
Hope came in the form of the new modular therapy drugs but when Scott was two he had to come off Orkambi because his liver wasn’t tolerating it. Being told their son was unlikely to ever tolerate it was almost as devastating as his diagnosis for Jill and her husband Phil.
“It was sort of like the potential of a nearly normal life versus a life untreated. And that was unbelievably difficult,” she recalled.
But in April 2024, Scott’s doctors decided to try a similar drug, Kaftrio, on a low dose. They held their breath and tried it. Scott had blood tests every two weeks. “The poor lad was like a pin cushion,” said Jill.
They got to three months, then six and now Scott has reached 12 months and his liver is still OK. “This past year since he started on the medication has been amazing. It’s really great. We’re just happy. It makes no sense, like much of life and this whole journey,” she said.
Thanks to advances in treatment, the CF population in Ireland is steadily ageing with 61.7% of people with CF in Ireland over 18 years of age and 15.4% over the age of 40. The fear now is that as CF patients live longer, medical staff are being reduced, leaving a deficit of expertise in CF-related diseases such as cancer.
“Happily, we're getting a greater adult population and yet we're losing staff. CFI fights the good fight trying to keep these positions in the hospital and the fundraising money is hugely important for that,” said Jill. The money raised through their annual 65 Roses Campaign funds fertility grants and financial aid for adults with CF.
“If you have cystic fibrosis, you can't get a mortgage because you can't get life insurance. Everything is harder for them. They're trying to hold down a job and but they can't get a mortgage. That's kind of a rite of passage that everybody should have access to or they can't have a child. So that money is just essential for just trying to give people a more normal life.”
As parents of a child with CF, the Dorgans cope by living in the present and refusing to think about the future. “It's a burying the head in the sand and just dealing with today,” Jill said. “We appreciate a normal day where everyone's healthy. I think that focusing on the short term for me is healthier,” she added.
Regular exercise is vital to keeping Scott’s lungs clear. An exercise grant from CF Ireland helped pay for a trampoline for Scott and his older brother Isaac, aged 7, which is “physio for him without even realizing it.”
There are no duvet days in the Dorgan household, even in lashing rain they’re out exercising to help keep his lungs clear.
But Scott is in Junior Infants, happy and thriving. Jill is determined cystic fibrosis will not define his life. “If there's any upside to it, it’s around trying to seize the day that you have.”
The ’65 Roses’ National Fundraising Day for Cystic Fibrosis Ireland takes place this Friday, April 11.
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