Steve’s Story

In the early hours of Thursday 9th March 2017, my younger brother Danny, passed away in his sleep from an undiagnosed heart condition called Brugada syndrome. He was just 25 years old.

I was only 13 months old when Danny was born, so I never remembered a day in my life without him being a part of it. We were inseparable as kids and even as we became adults, the bond between us continued to grow, as we shared interests in many things, the main one being avid supporters to our local East London football team, West Ham United where we travelled up and down the country together supporting our team. I never for one moment imagined I would ever have to live a life without him. Danny was a fun loving, social, young, fit, and healthy guy who lived life to the full, so the shock of his sudden death smashed our family into pieces.

As much as I try to forget the morning of 9th March 2017, it will always be forever embedded in my memory. It started as a normal day, or so it seemed. I got up for work and jumped on the train into London, shortly after starting my shift I had a call from my dad which I had to let ring through, seconds later my phone rang again, this time it was my mum. Strange, I thought but again I let it ring through as I was busy in work. Seconds went by and again my dad called again – This time I answered. I heard the words I never thought I would hear “Danny has died.” I can still remember the numb feeling I felt in that instant. Thinking I could do something, I run out the office and directly to the train station to get home. At that point, my mum called me again. I answered and could hear my mum crying – but this was not a normal cry. It’s hard to describe but this cry was different to anything I’ve ever heard before. It was at that moment it had sunk in what had truly happened – My brother had died.

Danny was just 25 years and 6 days old when he died in his sleep in the morning of 9th March 2017. There was no illness, no accident, no suicide, no warning, or reason, he just fell asleep and never woke up.

In the years before Danny’s passing, he had complained about minor chest pains. My mum, being the caring and always worried mother, took him to the doctors on 18 different occasions of the course of a decade for these chest pains. It was not until after his passing that every medical note and record for Danny was inspected from the past 18 doctors’ visits. We found that on one of the ECG results, it clearly showed that the referring GP had written RBBB (Right Bundle Branch Block). He had also written a comment to “Action referral letter to Cardiologist for further investigation”. Due to a clerical error at the doctor’s surgery, this referral was never sent. This had been Danny’s window of opportunity to be diagnosed with Brugada.

The months following Danny’s passing, my parents, siblings, and I were all assessed for Brugada syndrome. All our results were negative confirming that Danny’s case was sporadic – and started with him. It was during these tough times I realized the importance of detecting these conditions early on. Sadly, for some individuals, the first symptom of a heart arrhythmia, will also be their last.