Sian Donnelly – Bromley

I suppose my ‘story’ starts in 2004.

We were a few days in to a family holiday when my fit and healthy 17 year old brother collapsed and died. Following two post mortems (one in Cyprus, and one in the UK) the coroner ruled his death as SADS (sudden adult death syndrome). How can a 17 year old’s heart just stop? No warning, no symptoms – it was too difficult to comprehend.

This is where CRY came in, and the reality set in that we were not alone. At the time, statistically 8 fit and healthy young people died each week – this is now 12. Not only did they help me and my family with counselling & answering so many questions we had, they crucially suggested we were screened as a family for any underlying heart conditions.

A family testing day at Lewisham hospital concluded that my mum had Brugada Syndrome – the likely cause of Adam’s death. As I was only 13 at the time, I was told to just go for annual checks but everything looked ‘normal’.

In 2010, after 5 years of ‘normal’ results, an ajmaline test showed that I too have Brugada Sydrome. Normal ECG, normal echo – serious heart condition. After listening to my options, I opted very quickly to be fitted with an ICD (Implantable Cardiac Defibrillator).

Since Adam’s death and my subsequent surgeries, as a family we have dedicated ourselves to raising money for CRY and for awareness of undiagnosed heart conditions. The last thing I want is for another family to go through what we have been through.

I am so passionate about the work CRY does and try to help in any way possible. This includes attending MyHeart meetings, for people diagnosed with heart conditions. Speaking at local schools and funding screenings. In our community alone I know of three people of the similar age to me that have since been diagnosed and treated for a condition they didn’t know they had from a CRY mobile screening!

Seeing the charity grow in the last 10 years and the work they tirelessly carry out to raise awareness is the reason I am so proud to be a representative for such a great cause.