by Lili-Rose

Up until I was about 12 years old, I’d be fine. I’d get breathless a lot when doing sport but who doesn’t and dizziness seemed a bit normal, right? But, when I joined Air Cadets in April 2011, everything started to change. I used to do regular sport there twice a week including marching, rugby etc and suddenly I would start to develop even worse symptoms. Sometimes my heart would race during sport, but I thought that was normal. I started to develop episodes of fainting and loss of consciousness.

There has always been a family history of Cardiomyopathy so my Dad decided to take me and my brother to our GP to get briefly checked out. It wasn’t until my GP heard a murmur in my heart that we thought something bad may be wrong. My GP then referred me to my local hospital who then made further tests (Echo Scans, heart monitors etc). It was the day I had my Echo that I got diagnosed – I went into the room, the nurse started to scan me and everything seemed ok. This was until a doctor came in and said, “that’s a case of Wolff-Parkinson-White” right in front of me. That was when I got diagnosed.

He then referred me to a specialist hospital in London, and said it would be a 16 week wait to see a cardiologist there. By the end of September 2012, I was hospitalised at the specialist hospital after fainting onto a desk at school. I was there for 2 weeks and after observation they tried to do a catheter ablation which unfortunately had to be aborted after they realised the accessory pathway in my heart was too close to the good one. That upset me a bit at the time but they then put me on medication and I was fine for a few months – I’d have my bad week obviously, but I got used to it.

In February 2013 I was hospitalised again at the specialist hospital because my episodes began to get more frequent and I began to develop chest pain. After observation, they let me leave after 4 days. Since then, I just had to keep getting paramedics over to see me if I had palpitations for longer than a certain time or severe chest pain etc.

After much consideration, my specialist hospital brought me back in again in May 2013 and fitted in a loop recorder into my body. They now monitor me until they can figure out the best route to go. I coped by creating my own charity campaign called “Lili’s Heart Raising Awareness” which aims to raise funds and awareness for children and young people with heart conditions and I give money to charities like these to know I’m helping somehow.