"I hope Xander has a life full of opportunity and adventure": Dad Duane shares Xander's story

Xander is four years old and a little thug, that’s how I’d describe him! We have an older daughter, Willow, she is 6 and she’s a little fairy. She is very gentle and well mannered, and I think gave us a false sense of security… Xander came along and he is built like Hulk Hogan and is a wrecking ball! He’s also very smart, has real charm — he’s got his mum wrapped around his little finger — and is fun loving. He loves the outdoors, wrestling and dinosaurs. Xander and Willow have a really special bond; they dote on each other which is lovely to see.  

Xander’s CF diagnosis 

We didn't have a clue about CF when Xander was diagnosed. We had no history of it that we knew of within our families. However, looking back, I often wonder if my dad had it and was never diagnosed.  

It was around the 20 September 2020 when my wife Deborah called me. Xander was around three weeks old at the time, and she said that the doctor's coming to the house in 30 minutes and he thinks Xander may have CF. She was breaking down on the phone, and I remember being in a work meeting and I just got up and left to be with her. 

The first thing you do is Google it and it’s horrific. You get things coming up about average life expectancy and you don’t always realise how much medicine and research has advanced in recent years. It was really tough as the diagnosis wasn’t officially confirmed until he was six months old as they couldn’t get enough sweat out of him for the sweat tests. We also found out that Xander had a really rare gene - the doctors told us there were only 50 known cases of this gene across the world – and it means that modulator drugs like Kaftrio won’t benefit him.  

So far, we’ve been really blessed and Xander has been generally well. The first couple of winters there was lots of anxiety around him catching flu and other bugs. He’s had coughs and needed antibiotics, but he hasn’t had any really bad spells. He’s very physically strong and very active. We also live next to the sea and we hope all that stuff will help keep him healthy.  

It's been quite a journey, and I sometimes talk about CF as like you have a grey cloud hanging over you. You just don't know what's going to come out of it. Luckily, we've dodged quite a few showers, but that's not to say we won’t get caught in a snowfall sometime soon.  

Supporting the Trust 

Fundraising for the Trust has helped to give me and my wife a purpose. She’s a psychologist and I'm a construction guy. We're not going to find a cure for cystic fibrosis, but we can use our influence to raise money and awareness.  

As a parent when you're dealing with something like CF, it's out of your control. It’s a complicated disease and it’s hard to know what you can do to help. Fundraising is our way of helping to support the researchers and the brains of the operation, so they can find the breakthroughs and eventually a cure.  

The past four years we’ve taken on cycle rides, swims and organised coffee mornings, and I recently did a mountain biking challenge across the West Highland Way. It was a really tough challenge. There's a stretch along Loch Lomond that was absolutely horrendous. It would have been hard to walk, never mind trying to drag a bike through it. I think I was there for about three hours questioning my sanity and questioning everything! But we had some really special moments and have raised nearly £12,000 for Cystic Fibrosis Trust. 

My festive wish for the CF community 

I think this year could be our best Christmas yet because the kids are at an age where they are really excited and believe in the whole magic of Christmas. We will have all our extended family around on Christmas day and on the last day of school we’ll pick the kids up and stay somewhere for a little adventure. We’re trying to embed lots of little traditions as they grow up.  

My festive wish for the CF community is that we can remove that grey cloud hanging over people. Some people suffer from the storm. Some people are dodging it. But really in this modern world, we should find a way to remove it permanently.  

My hope for Xander’s future is that one day he can have a Scottish adventure, just like I have recently done. I hope he has a life full of opportunity and adventure, and that he can look back at his silly old mum and dad and know that we did everything we could to help those with cystic fibrosis.