On October 21st 2002, my brother Huw Lewis died during a game of football in Saudi Arabia, where he had lived and worked for over four years. He left his pregnant wife Sarah and 5 year old daughter Molly, as well as a devastated set of parents, siblings, friends and colleagues. Huw’s death was additionally hard to take in as he was extremely fit, having played semi-professional football for many years. He was also training to take part in the 2003 London Marathon.
Huw was not just my brother, he was also my best friend, and we had grown up playing sport together, drinking together and laughing together. Our closeness was compounded by the fact that whilst I studied at University in Swansea, Huw was living and working in the city and then, when I moved to Cardiff to do a Masters degree, Huw also ended up moving to the city with his work. Therefore, even throughout my student days, Huw was a massive part of my life.
All I remember about the moment Sarah phoned me and my girlfriend Lucy to tell us that Huw had died, was sinking onto the kitchen floor in our house and uttering an almost primeval scream that came from deep inside me. Somehow, Lucy then got things together enough to drive me to London to pick up my younger sister Becki before we all set off on a rather surreal 5 hour journey home to my parents in Wales.
After the initial shock had subsided, a massive number of questions arose. Why did he die? What caused his death? Is there anything we could have done about it? Would he have felt anything? By a horrible irony, Huw’s wife Sarah was a qualified cardiac nurse and she immediately knew that it could be HCM. With this information in hand, I started searching the internet for any other information. Pretty quickly, I came upon the CRY website and, needing to speak to someone who may some more information, I phoned their number.
My first phone call was with Alison Cox, who instantly put me at ease with her ability to both console me but also supply me with facts and information about HCM. Over the course of the next couple of weeks, things became clearer. However, our family had to endure a horrible 2 week period following Huw’s death before we could even get his body flown home from the Middle East. It was only when his body was returned and an autopsy was undertaken that HCM was confirmed. Further analysis of his heart tissue confirmed that Huw had died of HCM.
Following the results of Huw’s autopsy, CRY very considerately arranged for myself and Becks to visit the British Olympic Medical Centre at Northwick Park Hospital. Once here, we met Greg Whyte, CRY Chairman, who was extremely welcoming and willing to answer any questions we had. We both then had an ECG and an echocardiogram, followed by a consultation with Mr Nigel Stephens. Thankfully all the tests showed no sign of any abnormality, which obviously reassured both us and our families. My elder sister Sian also had an ECG and echocardiogram a few weeks later and again, no abnormalities were detected.
Approximately 6 weeks after Huw’s funeral, me and Lucy flew to Australia for a long-planned 2-month break to travel and watch the England v Australia cricket series. The timing of this was fortuitous as it gave us both an opportunity to get away from home and take in everything that had happened. However, the trip was particularly poignant, as Huw had also been a massive cricket fan and had regularly travelled the world with the ‘Barmy Army’ to watch England play cricket, taking a very large flag with him displaying the name of our cricket club back in Wales.
A few weeks before his death, he had sent this flag to me with the strict instructions to hang it at all the grounds we visited. Therefore, on Boxing Day at the Melbourne Cricket Ground, traditionally the biggest day in the Australian cricketing calendar, I was full of emotion as I managed to secure our flag in a prime position on the main stand.
This trip also provided me with a lot of time to think and it was during this trip that I vowed to do all I could to assist CRY in their work in raising the awareness of HCM and associated conditions that contribute to Sudden Adult Death Syndrome.