A DOTING dad from Donaghadee recently completed a 200-mile cycling challenge with six friends to send a message of hope to his son, who has a rare form of cystic fibrosis.
Duane McCreadie used his lifelong passion for cycling to raise £10,600 for the Cystic Fibrosis Trust, to help fund further research into treatments for the inherited disorder.
Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices and causes severe damage to the lungs, digestive system and other organs in the body.
It is a rare condition which has taken an even rarer form in two-year-old Xander McCreadie who has a genetic mutation which means he cannot be helped by the cutting edge treatments that have recently become available.
Duane felt that his son’s condition demanded that he do something that would send a powerful message of positivity to inspire his son.
And so was born the idea of the 200-mile cycle from Wicklow to Donaghadee which Duane undertook on July 30, accompanied by six of his friends – Matty Blayney, Richard McCullough, Ray Brownfield, Mark Donnan, Nathan George and Andy Hunter.
Explains Duane: “I have been a cyclist since I was 10 and Matty Blaney and I have been friends since we were 10 so cycling has always been part of my interests.
“Some of the guys were new to cycling but most of them have been doing it for a good few years, though we have never cycled that far before.
“It was my idea, I wanted to do something that was significant so the first thing was trying to find a route that was 200 miles and one that finished in Donaghadee.
“We sat over a map one night and that’s where we came up with Wicklow to Donaghadee. If you keep tight to the coast and go right up on the quiet roads in and around Carlingford, round Warrenpoint and in through the tail of Newcastle and right down the Mourne coastal route to Strangford you get just over 200 miles.”
It’s the third fundraising venture the family has embarked on for the Trust since Xander was diagnosed in January 2021 at the age of six months.
Xander’s mum Deborah raised £5,000 through a swimming challenge and Duane reached another £2,000 through a coffee morning at work.
“The first six months were very difficult,” admits Duane, “because there was a lot of uncertainty about how it would affect him and what I have done to help be more positive is fundraising from very early on.
“I’m a construction guy so if you tell me how to go and alter a gene I wouldn’t know what you’re talking about but what I can do is focus that energy on making money for the people who can.
“In order to make something positive we diverted that energy to trying to raise money to try and find a cure but also to send a message to Xander that we tried everything we could from an early age to help him.”
Following Xander’s diagnosis the family learned of a new drug on the market – Kaftrio – which was being hailed as a ‘miracle’ treatment for cystic fibrosis.
Says Duane: “My wife did a lot of research and when we found out what it was we thought this was great, that it would really help him.
“The people who it does help, it transforms their lives back to what they would have been in terms of dealing with the mucus. There are stories of people who have started to take Kaftrio that within days their lung capacity returns and all the stuff the mucus takes away is restored.
“Then the more we found out about Xander and what genes he has, it turned out he has this really rare form of cystic fibrosis. He is one of 10% of people who don’t benefit from these new miracle drugs.”
Duane admits that he knew very little about cystic fibrosis before Xander’s diagnosis.
“It is one of these things I had heard about before but until you actually live with it you don’t really understand it.”
He explains: “There are 2000 genes and to get cystic fibrosis both parents need to have one of these faulty genes and even then there is only a one in four chance that a child is born with cystic fibrosis.
“When Xander was diagnosed they tested for the most common genes, which is about six genes in NI because we’re quite a close pool, but there are 2000 genes across the world.
“You typically have a good idea of how it will affect you by the make-up of the genes that you have.”
The family and the doctors treating Xander are perplexed that one of the genes carried by Xander is so rare that there are only 50 known cases in the world.
Says Duane: “That’s pretty hard to understand because me and Deborah are both Northern Irish born and bred so where those genes have come from it is very hard to know.
“The second gene they discovered is also quite rare, so how the two genes work together we don’t fully know.”
Currently the Cystic Fibrosis Trust is trying to find a new drug that will help the 10% of people like Xander who don’t benefit from the current drugs on the market.
Duane hopes that the money raised by the cycle will help them to fund this research.
Until that time the family are doing all they can to stabilise Xander’s condition through a combination of medication and physiotherapy exercises.
Explains Duane: “Every time Xander eats we have to give him a medicine called Creon because the body can’t break down and process fat in the same way.
“The Creon is an enzyme that helps to break down food because the mucus has affected his pancreas from a very early age.
“The other way this could affect him in the future is it could affect his lungs so any time he gets a cough we have to go to the hospital and get him swabbed to see if he has a chest infection because the mucus can get into the lungs and cause terrible damage.
“The mucus can affect all parts of the body but pretty much it’s the pancreas and the lungs, but also in his future life it could affect having babies as well because the mucus can affect your sperm production.
“So it’s unknown at the moment in terms of how it will fully affect him but those are the common areas of what the mucus does within the body.”
Thanks to a regular regime of breathing and fitness exercises Xander is considered to be ‘extremely advanced’ for a boy who will turn two in September.
“He’s actually very fit and healthy looking. I think that’s to do with the exercises we were doing with him from six months old, which I think have definitely been of physical benefit to him,” says Duane.
He adds: “Some people say cystic fibrosis is like a silent disease because a lot of people who have it look quite healthy. Typically they don’t put weight on because their body doesn’t process all the fat so a lot of people who have it look from the outside quite healthy.
“On the inside if they’re not using their medication right or not following their doctor’s advice they may not be getting all the nutrients their body needs and their lungs can be badly damaged.”
The average life expectancy of someone with cystic fibrosis is 28 but Duane says this paints a more pessimistic picture than the reality.
“People did not used to be tested and often they were 18 before they were diagnosed, by which time the damage was already done. That’s why those statistics are quite frightening.
“The modern idea is that you test them young and find out and then you can get preventable medication that stops the body from being malnourished or stops the body from having damaged lungs.
“One of the advances they are developing at the moment is gene correction technology which allows the scientists to go into the body and cut out the bad gene and fit a proper one.
“These are the medicines that the £10,000 we raised will go towards developing and will hopefully make a small difference to a positive outcome.”
If you would like to make a donation to Duane’s cycling challenge pleases log on to https://www.justgiving.com/fundraising/wicklowtodonaghadee.
