“We just want Oliver to know he's not the only one living with the condition”: Mum Zoe shares Oliver’s story

Oliver is a caring, energetic boy with a tremendously engaging personality. He loves to learn, take part in various sports and activities (football, golf, taekwondo, swimming and biking), and explore the world around him.

CF diagnosis

I fell pregnant with Oliver naturally, and there was no previous history of CF in the family.

So, when Oliver was diagnosed, it was a massive shock for us. We didn’t know much about the condition; I had only heard about it in the news.

Oliver was diagnosed through the heel-prick test at around two and a half weeks old, but prior to that, we were in and out of hospital anyway because he wasn’t putting on any weight. Oliver had lost about 20% of his birth weight within the first two weeks.

During this time, the health visitors kept sending us to the hospital for tests, but nothing ever came up. So it wasn’t until the heel-prick test that we knew what was going on. Fortunately, I was already in hospital with Oliver at the time, and they kept us overnight, so the following day, we saw the CF consultant, who told us more about the diagnosis.

Suddenly being thrown into this new world was very daunting. Learning about a new condition and all the medications and treatment Oliver would need was a steep learning curve.

It wasn’t the newborn experience we thought we would have. We had weekly visits from the CF nurse to monitor how much milk he was having and how much weight he was putting on. Trying to get Creon® in on a little spoon for a newborn baby was really challenging.

I was also anxious about how we would tell our friends and family about Oliver’s CF. It’s so hard when your friends have newborn babies with no conditions. You start to think, “why us?”

Growing up and facing challenges

The initial CF diagnosis was extremely tough and overwhelming for us as new parents, but the help, support and guidance from Cystic Fibrosis Trust and our CF team at University Hospital Coventry & Warwickshire (UHCW) was amazing, and Oliver continues to thrive every day.

Oliver has been on Orkambi since February 2022 and is set to start Kaftrio when he turns six this November. We are so grateful to have access to this medication, which we know has been such a game-changer in the community. We just hope that one day, medications like this will be available for everyone with CF, especially those who can’t currently benefit from modulators.

Oliver has been on multiple antibiotics treatments since he was a baby and has had one hospital stay for IVs due to getting pseudomonas aeruginosa last April. This two-week admission was a huge thing for him to go through, not only because Oliver hated the IV drip but also because we were concerned about whether the IVs would actually eradicate the p. aeruginosa.

As a parent of a child with CF, you are constantly on edge every time you hear a cough or sniffle. Getting colds and viruses can be more serious, so we get anxious if friends, family and peers become unwell, especially now he is at school. It’s so anxiety-inducing, wondering if it’s going to develop into an infection, and then if it does, we are concerned about how much damage it will cause.

Oliver currently has staphylococcus aureus, so we are treating that with oral antibiotics, but it’s definitely a challenge always having to be mindful of the environments he might want to spend time in. This can take some thought and planning. 

We always have to be aware of infection control, too, minimising his exposure to germs that may thrive in environments like mud, rotting vegetation, straw, hay, sawdust, ponds and stagnant water. We make sure Oliver washes his hands regularly and that he has time to fit in treatments and physio, in the form of the Acapella, twice a day.

Communication

Oliver is now at the age where he is starting to ask questions about why he has CF and why he is the only one in the family or at school with it. He tells us that he feels different, and it has started to make him feel very isolated and upset. We’re currently in the process of setting up a penpal relationship with another CF child so they can communicate with each other and hopefully one day they will meet via video call.

We just want Oliver to know he is not the only one living with the condition, and we also want to ensure we take the time to listen to him and validate his feelings. We try to reassure him and speak about his CF and concerns in a way that is age-appropriate while being as open and transparent as we can be. 

We also want to make sure Oliver’s friends grow up knowing about his condition because ultimately, as they get older, they will be spending the most time with him, and I want them to look out for Oliver. 

We explain to Oliver that physical activity is really good for keeping him fit and healthy, as we know that being active will help to dislodge mucus, build lung capacity, maintain good mobility and posture and encourage good bone health.

Oliver’s accomplishments

CF hasn’t stopped Oliver doing some great things! Here are just some of his accomplishments...

• He was the Wednesday Warrior for the CF Warriors back in January.
• He was in an episode for a new CBeebies programme in April called What’s in Your Bag? He starred in series 1, episode 3, titled Bharatanatyam Dancer.
• Oliver has helped create a video of his clinic appointment, which the hospital now uses to show other children who may find certain aspects of their appointment difficult (Oliver used to hate having his bloods taken, so he spent a lot of time with the play therapist to help him overcome his fears).

Our hopes for the future

Our hope for Oliver’s future is that he is able to have all the opportunities he wants in life. We want him to live life to the fullest and really treasure every breath while keeping healthy and active. 

Fundraising and raising awareness 

I took part in the CF Mamas challenge last year, where I rowed for 20 minutes a day for 30 days, and we all raised an amazing sum of money for the Trust.

As a family, we always get involved in Wear Yellow Day and the CF photo challenges. I got involved in the first CF photo challenge during lockdown to help raise awareness of what it was like having a son who was deemed vulnerable and had to shield due to COVID-19.

The hospital printed all my photos and put them up in the corridor at the Warwick University Hospital to showcase life with CF.

I use my Instagram page @treasure_every_breath to highlight all the amazing things we’ve achieved with Oliver while sharing what he has to do every day to stay fit and healthy. 

Fundraising and support is essential for medical advancements and research, so the more awareness we can raise, the better.

Support from the Trust

We have turned to Cystic Fibrosis Trust many times throughout Oliver’s life. When he was first diagnosed, our CF team gave us leaflets from the Trust to help us understand the condition better. This helped us feel less alone and also allowed us to explain CF to our loved ones.

We also use the Trust for lots of advice and information. When Oliver started school, the school booklets and the CF health care plan were extremely helpful. We also follow the Trust’s Facebook page for updates and latest news. 

Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.

Will you join us this festive season to help fund more CF research and help change more lives?

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