Behind the scenes in the making of Cracking the CF Code

Ellie’s story

I’m Ellie, I’m Lead for Children and Young People at the Trust, which means I get to spend lots of time hanging out online with the brilliant young people in our Youth Advisory Group (YAG). 

The idea of Cracking the CF Code came from YAG. They were talking about the anxiety they felt as younger children, when they didn’t understand what CF professionals and their parents were talking about. We wanted to create something that helps children to understand everything they need to know about CF, so they don’t feel the same fear that YAG did.  

When we first started this project, YAG and I talked about what we wanted the resource to achieve for children with CF. The young people had so many fantastic ambitions for it.  The main thing was that they wanted children to feel more comfortable and safe, knowing what is happening to their bodies. They also wanted children to feel confident explaining CF to their friends and classmates, and to know that they are part of a strong community of other young people who are going through the same things they are.  

To create this resource, we met on Zoom twice a month and worked on the definitions together. Sometimes we split into breakout spaces, but most of the time we worked on each definition as a group. Sometimes we’d end up debating one small word for nearly an hour! We’d always finish off with chatting, laughing and a game of Pictionary though.

Co-producing resources like this alongside young people is so important. Young people with CF are experts in their own lives and bodies – who better to explain aspects of CF to children, than young people who have gone through all the same things themselves? We have received so much feedback from families, who say that this aspect of the resource is hugely important to them. Some say that their child feels less alone with their CF after reading the resource, others say that adults assume so much and it’s time to start listening to young people’s experiences. It’s exciting to think that so many people have been touched by YAG’s creativity, innovation and hard work. I can’t wait to see what they do next for the community.

The reaction to this resource has been absolutely incredible. We got through 200 copies within the first week of releasing it, and now a month on, we have already had to go back to the printers to order more copies.  

The feedback has been brilliant – people love the book and are being so nice about it. I even got to speak about it the annual European cystic fibrosis conference to a group of international CF professionals!

Bahar’s story

Hi, I’m Bahar. I’m the Digital Youth Programme Coordinator at the Trust and I oversee Building Brighter Futures, the online programme of events and workshops for children with CF and their siblings. 

I was thrilled when Ellie approached me about providing the illustrations for Cracking the CF Code. I had previously provided some artwork for YAG’s awesome AlphabExercise project, and had lots of fun doing it, so I jumped at the chance to work with YAG again on this project. 

I participated in many online YAG meetings to work up the design concept for this resource, where I shared initial line drawings, carefully listening to their ideas about how colourful, expressive and unique they wanted the illustrations to be. I trusted them to give honest feedback – and they did! The YAG members were kind and constructive with their criticism, encouraging me to bring their vision to life through my distinctive art style. 

The YAG team themselves were a huge inspiration for my design. Their personal stories related to medical terms in the dictionary gave me deep insight into their experiences, which I translated into a visual narrative. 

I absolutely love drawing (you can follow my Instagram @bee.moo_draws) so getting to do it as part of my job was incredibly rewarding. I especially enjoyed turning YAG’s ideas into visual cues – it was fun finding creative ways to represent words or concepts for very young children. My favourite illustrations were the germs on page 28, featured in the ‘Germ Mix Up’ activity. I aimed to make microscopic germs – which often look strange and alien – appear cute and playful for kids. 

I felt immensely proud of the finished product! It was an honour to be part of such a meaningful passion project and finally see it all come together was the icing on the cake. Everyone involved worked so hard on it, and I hope that young children with CF will feel empowered and proud of their condition after reading Cracking the CF Code! 

You can download or order a copy of Cracking the CF Code here.