Parents of four-year-old with cystic fibrosis raise more than £30,000

Parents of four-year-old boy with cystic fibrosis raise more than £30,000Source: PA

Transcript

00:00I'm Duane. I am the father of Willow and Xander.

00:04And I'm Debra and I'm their mum.

00:06We live in a small town on the coast of Northern Ireland

00:09and there's lots of salty fresh air out there for Xander.

00:13I had heard of cystic fibrosis but I didn't know much

00:17apart from that maybe you might cough all the time

00:20and it was something that impacted your chest.

00:22Our knowledge of cystic fibrosis prior to Xander's diagnosis was quite limited.

00:27We got a call from the health visitor who asked if she could come

00:31and retake the field prick test.

00:34That's when we were told that they suspected cystic fibrosis

00:38and then that started a period of about six months of uncertainty.

00:42Shortly after Xander was diagnosed they started the process

00:46of trying to find out exactly what his mutations were.

00:49He was incredibly rare in terms of his gene pairing.

00:54They told us that at last count I think there would have been

00:5750 cases worldwide of this pairing.

01:00The fact that he was so rare was a bit of a curveball.

01:04So that hope was dashed when we realised that the modulator therapies

01:07probably wouldn't work for him.

01:09I'm an engineer, I'm a builder. I have no idea how to modify a gene

01:13but I am quite good at making money and influencing people to donate money.

01:18I would watch some of the research that's being done and it's mind-boggling.

01:21If we can raise some money to go towards that, that hopefully then shapes the future.