In 2014 my brother suffered a cardiac arrest. He was 21 at the time. Luckily he was in the car with my dad who rushed him to the hospital and they were able to resuscitate him (twice). Following a lot of tests it was discovered that he had Brugada Syndrome. As with most Brugada diagnosis, he had a ICD implant inserted which monitors heart movements and will kick start the heart if required.
Similarly to most of the stories we have read in C-R-Y resources, our immediate family also got tested for signs of Brugada. Mum, Dad and I all took the Ajamline test in October 2014 . Mum and Dad obtained negative results and showed no signs of Brugada, unfortunately I was not so fortunate. Towards the final stages of the test my ECG reading (in one lead) showed signs of Brugada. I have no symptoms and do not take any medication as a result of this diagnosis; I do however avoid prohibited drugs and remain vigilant of any warning signs.
Following a search for a charity or support network which primarily focused on young people my brother and I came across C-R-Y. We found that a lot of well-known organisations focused on age-related heart problems and some had little or no knowledge of rare conditions such as Brugada. When we discovered C-R-Y it was comforting, both for us and our family. We have found the newsletters, in particular the members’ stories and also the information in the members’ area to be a good resource and reassurance that there are others who have been through similar experiences.
It is now 3 years on and following discussions with our family, we felt it was important to give something back and to do what we could to help C-R-Y to continue to provide as much support to those who need it. An initial idea of family-only fundraising event quickly evolved into an Afternoon Tea in the local Church Hall. We sought donations from local businesses who were only too willing to supply buns, tray bakes, tea and coffees. We spent a lot of time organising and preparing for the event however it was all worth it. In total 100 people attended the Afternoon Tea and we managed to raise a staggering £2,000 through tickets, donations and raffle tickets.
Without the support of our friends and family, French Village Bakery and Henderson’s Group, the event would not have turned out as successful as it was. It was encouraging to know how many people wanted to support this good cause and, more importantly, learn a bit more about the charity and the impact of heart conditions.