Our son, Owen, was born with Primary Ciliary Dyskinesia (PCD), he's 9 now but it took us 6 years to get a diagnosis. From emergency doctors at a few weeks old to many tests, scans, appointments, medication and specialists, we always knew something was wrong.

PCD is a rare, lifelong, genetic disease with only around 1000 people in the UK currently diagnosed. People with PCD have faulty cilia which are microscopic hair like structures that have many functions within the human body. This causes recurrent lung infections, hearing loss, sinus disease, fertility problems and much more. It's extremely important to have an early diagnosis and to manage the condition on a daily basis as these infections, even with treatment, will eventually cause scarring on the lungs (Bronchiectasis) and a gradual decline in lung function.

Unfortunately, Owen already had lung damage when he was diagnosed and, despite all best efforts, this has worsened over the last 3 years. As this is such a rare condition it means that it's very hard to establish the outlook for Owen. These are the facts as we know them now:

It's a progressive condition

- The only current treatments are intended to slow the progression of the disease

- Pathogens (Bugs!) that cause these infections will become resistant to the many different antibiotics that he takes

- These bugs are found everywhere as we go about our normal lives

- Minimum 2 hours per day spent on chest physio in order to clear the airways

- No specific treatments for the disease exist, current practice is to use those for Cystic Fibrosis (CF)

- Its difficult to attract research funding for rare conditions such as PCD

- Lastly, it is a progressive condition and, no matter how rigorous we are with his physio and careful with cleanliness and what he is exposed to, we can't change that

At the start it felt good that we could do something positive through physio and diet/keeping healthy but it soon became apparent that it wasn't enough. Our target is high but it can't pay for any unique treatment that is going to help Owen, the treatments simply don't exist. We want to raise some money to go to research so Owen and others like him have, at the very minimum, specific treatments for their condition and, at best, ultimately a cure.

We will be organising and taking part in events throughout the year in the hope to raise as much as we can.