Team Ewan: Colleen runs the Marathon for little Ewan

What was Ewan’s diagnosis like?

It was awful. He was born in Durham Hospital; it was a very easy pregnancy, and he seemed healthy, but they kept us in because he had problems feeding. They found out he had a bowel blockage and rushed him in an ambulance to the RVI in Newcastle.  He had an operation, and they said he had meconium ileus, a bowel blockage.

It was at this point they started asking us all these questions about if we had CF in our family and I kept saying no, not knowing what this even meant.

He had his operation and went into intensive care. In the meant time they had done the heel prick test, and once Ewan was out of intensive care the Cystic Fibrosis team came round to the ward and told us Ewan had CF. It was an absolute bombshell, on top of dealing with a really poorly baby in the hospital.

We were hoping to get discharged to take Ewan home, but my husband kept saying he felt like something wasn’t right with Ewan. A little later my husband touched Ewan’s nose and he was freezing cold, so we got some help. They checked his blood pressure and temperature and immediately rushed him to intensive care with sepsis.

We ended up spending nearly seven weeks in the hospital, so finally, being able to take him home was fantastic. He still needed an NG tube and oxygen, but it didn’t last long, and then we started getting on with it.

How did you deal with Ewan’s diagnosis?

It’s completely changed our lives, but at the same time, you do forget about it a bit. Psychologically it’s been a massive change, especially with all the trauma from being in the hospital, but we only have one child, so to us, all the nebulisers and tablets are normal. It’s like putting on his socks and shoes.

People say I’m really resilient and strong, but I don’t know any different. We see other children like our nieces and nephews, and we see the differences in their routines, but to us, it’s what we’ve always done, so it feels normal.

Why did you start fundraising for the Trust?

We’ve always fundraised for charities. I volunteer with a youth group, and we used to fundraise for them a lot. Once Ewan got diagnosed, it just made sense to fundraise for Cystic Fibrosis Trust because we have a connection to CF now. Ewan was born in January, and by June, my husband and his sister and mother had signed up to do the Great North Swim for CF Trust. We hadn’t told many people about Ewan’s diagnosis at this point, so once we started asking people to donate to the Trust for his swim, we decided we needed to tell everyone.

Our friends and family started joining us in our fundraising, and eventually, we set up Team Ewan, which is a fundraising team that people can join, and we help support their fundraising for events. We have T-shirts and jumpers with our own Team Ewan Logo and the Trust logo. It’s completely taken off, and it’s all down to our friends and family and the people who have got behind us.

How have you been preparing for the London Marathon?

Running’s my thing, so it’s been ok. I do the Great North Run every year, so I’m used to it, but I’ve never done a marathon before. I didn’t expect to get a place when I entered the ballot, so I thought if I get it great, if I don’t, no worries. But I did!

I have a running coach who’s helped me since November to get stronger and run more, and that’s been amazing. I’ve had injuries and problems with my right leg, but nothing some physio and new trainers couldn’t help with. It’s hard to fit it all in, I work full time and got a new job in the middle of all this, but I enjoy running and if I want to find time for something I will.

How are you feeling about the day itself?

In two minds, really. I feel quite confident, but I’ve never run 26 miles- I’ve not run more than 18.5 miles. It’s quite hilly where I run here in the Northeast, so I’m hoping that the lack of elevation in London will work in my favour. I am worried it’s going to hurt! I’m also wondering how it’ll compare to the Great North Run because I love the atmosphere there. I’m looking forward to saying I’ve done a marathon.

Ewan is going to stay at home, but he knows what’s going on. He knows that we fundraise for him, and he knows about Team Ewan but I'm not sure how much he understands. He loves seeing his name on our banners and jumpers. I hope one day he’ll understand, and he’ll thank us for it.

What advice would you give to other parents of children with CF?

Do what feels right for you and your child. I also would say to stay off social media. There can be so many amazing CF communities and presence online, but in the first instance, I would say to get to know your child and their CF before you go online. Every child with CF is different, so it’s important not to compare your experience.

Also, every hospital does things differently, so don’t worry that you’ve done something wrong. Get to know your child, trust your instincts and work with the health professionals because they will give you the best advice.

Is there anything you wish you had known about CF before Ewan got diagnosed?

I wish I’d been aware of the condition. Our CF consultant told us when Ewan first got diagnosed that he’d been born at the best time because there was so much promise and treatments were getting better and better, but it’s still a massive shock, and just knowing about it would have helped.

What are your feelings about the future? Any plans?

We’ll keep fundraising for as long as we can. We’re about £55,000 in, and we plan to keep going. It’s a worthy cause, there have already been so many amazing changes to the CF landscape, so we’ll keep going. Ewan’s only little, so like with any child, you never know what the future looks like - but for now, we hope for the best and take it day by day, month by month.

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.