Duane's epic cycle ride for his son

Hi Duane. Can you start by telling us about you son Xander’s CF diagnosis?

When Xander was born they did the heel prick test, and around day 20, my wife Deborah rang and said there was a doctor coming round to speak to us. I was in a meeting but I got up and drove home so I could be there too. They said there was an irregularity with the bloods and it pointed towards cystic fibrosis. We then learned all about sweat tests because Xander had about four of them, and they couldn’t get enough sweat out of him, so it kept coming up as inconclusive. After six months he got diagnosed. He has a really rare gene; the doctors told us there were only 50 known cases of this gene across the world. We don't know how it will affect him yet, we just know that his gene is too short instead of too long, so Kaftrio won't benefit him.

It was stressful when he got diagnosed. My wife was straight on Google and read all these horror stories about the average life expectancy and all that sort of stuff. She was in bits, probably for a couple of months. I wanted to turn the negative into something positive and that's when I started my fundraising.

What was your motivation behind your cycle ride?  Was there a particular moment when you decided that this is what you wanted to do?

My motivation was to send a message to the 12-year-old Xander. I actually had cancer when I was 18 and during that process, I became quite stubborn and determined. When I first found out I was sick, I was upset the very first day and then I just got on with life. So, I suppose I wanted to send him a message of not letting this become an excuse for giving up in life. I want Xander to know, when he’s older, that we’ve had his back from the day he was born.

That’s a really powerful message. Why did you decide to raise money for the Trust?

I think the Trust is a good source of information and inspiration. Since we found out Xander was sick, we have done six different charity events for the Trust. And we’ve got into the habit where one year my wife does something, and then the next year I do something, and I think we will continue that until Xander is old enough to take the baton from us!

Congratulations on the cycle ride and thank you for your amazing support. What was the ride like?

It was great because every time we stopped for coffee, I was able to check my phone and since our last coffee stop, we had raised an extra £300 or £350. It was really motivational. The weather was not kind, so it was good to keep the spirits up and see so many people getting behind us. We were shocked by how much we ended up raising. We're actually nearly at £10,800, which is the amount of people in the UK living with cystic fibrosis. So maybe that's a number that we should round off at!

I had set up a WhatsApp group with the riders, and then the day before I opened it up so everyone could add friends and family to the WhatsApp group. When we finished, there was a bit of a crowd there cheering us on because people knew where we were. My kids were able to stay up a bit later and see us finish too.

Tell us about Xander. What’s he like?

He is such a thug! He’s really strong, he's very able and his speech is fantastic compared to his older sister when she was his age. If you met him, you would not think there was one thing wrong with him. And he loves food! You will never see a boy as happy than if you give him raisins or a chocolate bar. He seeks danger and capitalizes on it. He’s just a normal 2 year old.

You mentioned you have another child too, a daughter. Has there been any impact on your family life?

Life with a CF child isn’t too different. We give Xander Creon before his meals, but that’s it. Sometimes there might be a situation where you go somewhere like the farm and my wife Deborah will be cleaning him and washing his hands, but apart from that we don’t have a huge impact in our life at the moment and touch wood it remains that way. Obviously if Xander started getting bad coughs or a lung infection then things might change but it’s just a case of keeping him out of hospital and keeping him fit and healthy.  When he asks for a PlayStation, he's going to be deeply disappointed because he’ll probably get a bike instead.

There are some precautions you might have to take when in certain places, but generally he lives life normally. I imagine it'll be something that comes to a head once he goes to school or joins sports clubs. Then we might have some more conversations about what if he can't join that school or football team because somebody else has CF.

Finally, what are your hopes for Xander’s future?

The simple hope is that they find a cure that takes away that unknown. With cystic fibrosis, it can feel like there's a cloud hanging over you. If that cloud was able to be removed from Xander, then I think that's a life without limits. If Xander can do whatever he wants, whether it be having children, sports, work or whatever he decides to focus his energy on, that’s a life unlimited.

Thank you so much to Duane and his friends for supporting Cystic Fibrosis Trust. If you'd like to follow in Duane's footsteps, you can find out more about ways to get involved here.

You can still donate to Duane's JustGiving page here. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.

Your donations help us fund vital research. Donate today to help everyone with CF live a life unlimited.

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