Tony Eames wrote his story to be included in the myheart booklet which was launched in November, 2013.

I had my first episode of fainting at 4 years old. From then on I passed out regularly. Sometimes I passed out several times a day. During this time I was not allowed to do any school sport or go out in the playground.

I was never invited to other children’s parties as parents were so concerned that I might pass out. I even had to be escorted to and from school and around the school so that I was never alone in case I fainted.

These attacks continued on a very regular basis until it was finally suggested that I had an ECG and was diagnosed with long QT syndrome, a rare heart condition that can cause sudden death in the young, at the age of 12.

For eight years my family doctor had treated my fainting attacks as epilepsy and panic attacks. It was suggested that I be sent to a psychiatric institution, something my parents refused to allow. No-one had tested my heart and all the time I was at risk of a sudden fatal attack. I don’t understand why it took so long for someone to think it might be a cardiac problem and not mental at all.

After my diagnosis I was put on medication to regulate my heart rhythm. At the age of 18, when in my final year of A levels, I became ill again and required a pacemaker implant to back up my medication. My family and I were devastated to be told I needed an implant as I was now enjoying my teenage years after a traumatic childhood.

Soon after the implant I left the security of home for University life in Newcastle. However I decided from the start to be open to my new friends about my heart condition and pacemaker. This gave me confidence, which was seriously lacking during my childhood.

The implant has enabled me to do far more strenuous exercise. Table tennis, jogging and visits to the gym are regular activities. It is fantastic to be free to participate in so many things that for so long I could not even think about trying. Last year I tested my own confidence and achieved a major personal goal by abseiling down from the Tyne Bridge for charity. This really did test my heart and my parent’s nerves!

Through CRY, my story may help further publicise awareness to the health professions and the public of why young children may be dying suddenly and the simple tests that are available. After hundreds of fainting episodes, a pacemaker fitted and taking daily medication I regard myself as one of the lucky ones and intend to live life to the full.