On 12th May, 2023, our world was turned upside down yet again when our precious son, Cooper was given a diagnosis of Primary Ciliary Dyskinesia (PCD) at just 3 years old. In addition to tracheomalacia, laryngomalacia, a small atrial septal defect (hole in his heart), problematic asthma, eczema, a hearing impairment, and reflux, this diagnosis hit hard.

PCD is an incredibly rare, genetic, lifelong and devastatingly, incurable condition where the cilia (microscopic hairs found in the lungs, nose and ears) don’t work correctly, therefore impairing their ability to remove germs and pollutants, and allowing mucus buildup and infection. This causes a runny nose, a persistent cough, frequent lung infections, sinusitis, bronchitis, hearing issues and often, fertility issues.

Managed similarly to the much wider known Cystic Fibrosis, Cooper takes antibiotics 3 times a week (and will continue to do so for life) and needs to undertake multiple sessions of chest physiotherapy daily. When his symptoms deteriorate, Cooper needs an intensive and aggressive four times a day antibiotic treatment, and if these fail, it’s a long stay in hospital for intravenous treatment. Cooper has spent much of his 5 years in hospital with literally hundreds of appointments and dozens of stays. Cooper’s symptoms will continue for life and typically, PCD patients develop bronchectasis (irreversible lung damage). We must find a cure.

It hasn’t been easy for our family but throughout it all, Cooper has shown remarkable resilience, tenacity and an absolute lust for life. So many people are surprised when they hear Cooper’s story because he is absolutely bossing life! We know times are tough and with Christmas just around the corner, this is a big ask, but if you can spare anything at all to help us help PCD Support UK to support families like ours and in their quest for a cure, we would be so, incredibly grateful.

Thank you for reading this far. We hope to see you at Cooper’s Christmas Fayre & Coffee Morning on 30th November. Thank you in advance.

With love, Super Cooper the Trooper and his biggest fans, Kirsty, Calum and Jude xx

* * * * * * *

We are PCD Support UK. We’re here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management and treatment.

Primary Ciliary Dyskinesia (PCD) is a rare, genetic disease affecting around 1 in 15,000 people in the UK. It's caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility and causes recurrent respiratory infections.