“We hope our children will all have a life unlimited, both in terms of their ambitions and their life expectancy”: Thomas and Saskia share their story

Our CF journey

We are a family of five, and our three children all have cystic fibrosis. Our eldest son Oscar (4) was diagnosed through the heal prick test. This started our journey with CF, and so our younger children Ysé (2) and Philippa (4 months) were both being diagnosed pre-birth. We've had a lot of support from the Bristol Children's Hospital, who look after us and our children, as well as from Cystic Fibrosis Trust and other CF parents along the way. 

Once we knew about the risk of CF, deciding to have more children was a journey in itself. Our outlook on life and CF is generally positive, as we are lucky to live in a time where life with CF is changing. CF is obviously difficult to deal with on a daily basis, but it has also brought a lot of positives into our lives. 

The impact CF has on everyday life 

The burden of cystic fibrosis is obviously higher with three children, and we spend a lot of time doing physio and sorting medication. The risk of cross-contamination and coughs and colds also brings a lot of anxiety, and it can be hard being isolated during the winter months when we want to protect the children. However, we take comfort in knowing that our children can support each other and have to do the same treatments. We have a lot of fun doing physio - sometimes, the kids even want to do it again because they enjoy the games and stories so much! 

Advice to other families

We would tell them to focus on the hope brought by the modulators. CF reminds us that life is fragile, so as a family, we treasure all the quality time we spend together. Our children are also very happy and incredibly resilient, so we also take comfort in this. 

We hope our children will all have a life unlimited, both in terms of their ambitions and their life expectancy. We also hope that all patients with cystic fibrosis have the support they deserve, not just the ones who can benefit from modulators.   

The importance of research

The impact of current modulators available is still not fully understood, and cystic fibrosis is a very complex condition, so the effects of these modulators must continue to be researched. The existing modulators are also not a cure, so more research is needed to improve these treatments further. Additionally, not everyone can benefit from these modulators, so more research is needed so that everyone in the CF community can benefit from medication. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11, 148 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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