Our boys were diagnosed with a rare lung condition called Primary Ciliary Dyskinesia (PCD) at Royal Brompton Hospital when they were aged four and six. They are still patients at the hospital, although now they are young adults.


As children they would get nasty chest infections and would require IV antibiotics. We would end up moving our life into Rose Ward for a couple of weeks at a time. 


In between physiotherapy sessions and antibiotics, the boys could enjoy going to the hospital school – highlights for them were playing the instruments bought in by the Royal Symphony Orchestra and visiting a local farm on a school trip. 


Out of school hours we used to enjoy exploring the local area – I can't remember the number of times that I have been to the Natural History Museum with them to see the dinosaurs, although I know it is lots. We also used to enjoy walking along the King's Road, counting the number of Chelsea Pensioners we saw and, when the weather was bad, just wandering the corridors of the hospital looking at the art on the walls. 


One day with cannulas in their arms two policemen stopped them to ask them what they had done to have such big bandages on their arms – after giving them some story about falling out of trees – the boys then got the opportunity to try on their hats and inspect their riot gear.


As a family, we have always received excellent care from the Brompton and the medical staff have become like an extended family to us. We quickly learnt that because of the rareness of the condition there are only a few centres in the world that could look after them.


We are so grateful that we were referred to Professor Andy Bush and his wonderful team who looked after them so well as children. Now, as young adults, they remain patients of the Brompton but don't have to spend so much time in hospital (touching wood as I type) and are both pursuing their dreams.


If you would like to learn more about PCD then please check out Fiona’s charity website: www.pcdsupport.org.uk

- Fiona Copeland