A NI dad has opened up on the "awful" moment he was told his baby son had Cystic Fibrosis.
Duane McCreadie's son Xander received the diagnosis when he was six-months-old after the family were told there was something wrong shortly after birth.
The tot, who turns two in September, has a rare genetic mutation meaning he is one of the 10% of people living with the disease who will not benefit from new CFTR Modulators like Kaftrio.
Read more: Cancer survivor spotted symptoms after same illness claimed life of his mum
Donaghadee man Duane told Be : "They first realised something was wrong when they did the heel prick test at around 20 days. It went on for like six months trying to diagnose exactly what was wrong, as you have to do a sweat test.
"We finally got the diagnosis in January of the following year."
Duane added that there is no known history of Cystic Fibrosis in their family. He continued: "One of the reasons it was so hard to prove Xander had it was that one of his genes that he has, there's only 50 people in the world that have been recorded to have it."
The father described the moment they were told of the diagnosis as "awful".
He said: "When you look at the statistics, the current life expectancy is like 28, so especially for my wife, when you start looking it up it is frightening - what can happen, the impacts of it...
"It was a really, really bad time... They did the heel prick test... then I remember my wife Deborah rang me on a Tuesday morning and said, 'Duane, there is a doctor coming to the house at 10am, they think Xander might have cystic fibrosis because of this test'.
"There was no warning. The doctor was coming to the house in an hour's time. I just jumped into the car from work in Belfast and drove home to hear from the horses mouth what was happening.
"Even now we don't really know how it is going to effect Xander. Any time we feed him, we give him what's called Creon, an enzyme that helps break down the food."
Duane added: "CF so far has affected his gut. Xander likes it as we put it into a fruit puree so it's like a bit of a treat for him and he's never said no to it.
"At the moment he's doing well, looks really healthy and has put on good weight, he could be a rugby player, he's really well built. That's also to do with a lot of the physio that we have to do with him.
"From a very young age, we had to bounce him, encourage him to play and give him breathing exercises to help develop his lungs so that if he ever gets a lung infection, he is actually fit and able to be able to deal with that.
"As Xander grows up, the best thing we can do as parents is not give him a computer game and make sure he is outside playing and getting that fresh air."
Although the family know Kaftrio will not benefit Xander, the Donaghadee dad said: “No parent wants to be in this position however my wife Deborah and I recognise that the best action we can take is to raise funds to support the work of scientists and researchers who have made finding a cure for ‘the other 10%’ their life’s work. We believe that funding this research will mean that one day Xander, and all babies born with CF, will live a life entirely without limits."
Duane, joined by Matty Blayney, Richard McCullough, Ray Brownfield, Mark Donnan, Nathan George and Andy Hunter are setting out on a 200 mile cycling challenge on Saturday, July 30. All funds raised are going to the Cystic Fibrosis Trust.
The group of amateur cyclists will depart from the Wicklow mountains at 5am, accompanied by support vehicles, with the aim of arriving at Donaghadee Harbour shortly before midnight.
"As soon as we found out, we started fundraising because as a parent you feel quite helpless. I'm a construction guy. I don't know how to alter somebody's genes but I can raise money and I can put the energy into that.
"I think that as a parent, raising money is excellent and that's a fantastic thing that will hopefully make a small difference to that technology but what it's really doing is sending a message to Xander that we have his back from an early age.
"If he gets to 15 or 16 and sees the effort that we've put in, hopefully that will inspire him to live the best life that he can, to keep fit and healthy and stay away from things that might cause him further problems.
"To me, there is a bigger message there about him growing up," Duane said.
To donate to the fundraiser, CLICK HERE.
READ NEXT:
- Belfast dad with MS to run length of Ireland in nine days
- Co Antrim boy diagnosed with leukemia after limping
- Mum, 35, diagnosed with MS determined to be there for baby boy
- Mum on daughter's hepatitis diagnosis after bouts of vomiting and yellow eyes
For all the latest news, visit the Belfast Live homepage here. To sign up to our FREE newsletters, see here.
