George's Story

George was born on 3rd November 2021 and was diagnosed with CF four weeks later. He spent two of those weeks in the special care baby unit and the other two either hungry, unwell, or losing weight. It was a huge emotional burden for new parents and a dreadful way to enter the world.

That changed when he was diagnosed and we got specialist care and resources to understand his condition and how we could best care for him.

So what does CF mean for our family?

He takes 7 different types of medicine each day which equates to approximately 30 tablets. Alongside this medicine, we have to help him to carry out respiratory physiotherapy every day to ensure good lung function. We have to monitor every environment for cleanliness to minimise the risk of bacteria and infection. He was on antibiotics regularly for the first three years of his life and continues to need them frequently to fight off infections. He was hospitalised for two weeks in 2024 for a bronchoscopy and IV's to fight off a lingering lung infection. We attend quarterly hospital clinics with his CF team, speak to them regularly to talk through issues and have become well-versed in doctors notes and charts.

The list is exhaustive but the reality is we don't know any different. Being a new parent is hard but having to deal with the uncertainty of this condition every day is harder, even as you learn to live with it.

What we do know is that without the support of the CF Trust, our nursing team, and the CF community it would be exponentially more difficult than it is. This support and the work of the CF Trust makes thousands of families lives better every day.