“He’s just a happy boy who’s always got a smile for everyone, including strangers” First time Dad Harry shares Kenny’s story

Can you tell us a little bit about Kenny?

Kenny was born in October 2022, and it wasn't until a couple of days later that my wife Nathalie and I realised something was wrong. He hadn’t passed his first stool and was taken to hospital which is where we were warned that there was a high possibility that it was cystic fibrosis. He had surgery, which went really well, the doctors were fantastic with him, and he was out within a couple of weeks, but it was confirmed that he had CF. He luckily hasn’t had any problems whatsoever since then and he’s gone from regular appointments at the clinic to just monthly ones and they’re very happy with him. He’s been putting on weight and hasn’t had any infections and he’s really healthy. He’s just a happy boy who’s always got a smile for everyone, including strangers. He’s also become far more active than before so that’s really encouraging and it’s something we want to keep working on and developing since it will become a key part of his life.

Did you know anything about CF or about being carriers of the gene before having Kenny?

I had heard of CF at school, where there was a teacher and another student who had it. I knew from having them on social media that it was something that they’d struggled with and had to make adjustments for, but I didn’t know that it was a lifelong condition and what it did to the body. So it’s been a huge learning curve, and that’s on top of the learning curve of being first time parents. We’re still learning now. As for knowing about being carriers of the gene, absolutely not. It’s just not been in our family at all, so it came as a complete shock.

What have the adjustments of physio and medications been like for Kenny, especially as a newborn?

Physio is a difficult one. He still doesn’t like it, but he went through a phase where he really didn’t like it and he would just cry and scream and that was really difficult. We’re still working with our clinic to try and find the best physio for him, one that he’s happy with. We did think about how we could go about it in a different way and got him a door bouncer. He absolutely loves bouncing in it and will laugh and babble, which is amazing because it’s a form of physio that he’s happy with. As for medications, in the beginning we’d stress about it a lot, but we’re on top of it now. It’s still difficult, but first thing in the morning we lay out all the medication he needs for every meal. He has vitamins, he’s on trial for antibiotics, and he has medication for reflux. It’s just become part of our daily routine. When you’re going to have a child for the first time, you take in as much information as you can. You read books and go to classes and think you’ve got this, but then you have a huge curveball thrown at you and it’s hard, but we’re definitely getting there.

When you look at other families who don’t have to deal with CF, does it affect you in any way?

There are lots of children in our family and in our life but I don’t think any of them have any sort of thing like Kenny. Sometimes there can be a little bit of self-consciousness when we’re out in public and you’re concerned whether strangers are looking at you because you’re doing things differently, but it is what he needs and it’s just part of our lives now. He may be different to other children in some ways but in many ways he isn’t. He’s a little boy first and CF is second.

Do you have any advice for parents who have just found out that their child has CF?

Take each day at a time, your child is more than their CF so make sure they’re as happy and healthy as possible and that they’re loved and cared for like any child. It will be difficult, but that’s just part and parcel of having the diagnosis so be kind to yourselves because you will make mistakes, but it’ll be okay in the end. Also, reach out to other CF parents. Nathalie’s done that, particularly on Instagram, and they discuss shared experiences which has been a really positive experience for her.

What are your hopes for Kenny’s future?

To be whatever he wants to be. Be active, which is something that reflects on us in a way because we should lead by example. Something that I am nervous about is reaching the point where we have to try and explain his condition to him. I’m a bit scared of the future in terms of having that conversation with him. But it’s the same as any parent with any child, you just want them to be happy. Plus, there’s an added thing of keeping his health in good shape, and just making sure that he has the best chance to live a healthy life.

You mentioned the fact you were nervous, have you thought about how you will approach the conversation of explaining his CF to Kenny?

I think that’s something that really gets me upset, because he’s innocent now and doesn’t know, but there will be a point when we have to sit down and say this is what your life is, we didn’t want it to be this way, but it is, and there are things that you might not want to do but you will have to do them, and that there will be certain restrictions, things that you might not be able to do that other people are doing. I don’t know how to approach the conversation to be honest, so that’s the most nerve-wracking thing about the future, more than anything else.

What are your hopes in terms of CF related research and medicines?

I think CF is a heavily researched condition and there’s a lot of research that happens, and I hope that it will continue. It’s important to keep up with that level of development because in the last 50-60 years we’ve come so far. There are some really positive stories about Kaftrio but not everyone can take it, so that’s something that can be developed. There’s so much further we can go, if we just continue with the level of research and development that’s happened so far, it can be even more amazing.

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.

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