Brugada Syndrome Diaries

When thinking about fundraising for a charity, CRY was an obvious choice for me as they’ve done so much for my family and I when we were younger. When I was just six years old and my Brother hadn’t even turned two yet we lost our Dad, he was just 34 years old himself. This was back in 2003 when knowledge wasn’t as advanced as it is now, so his death was classed as SADS, which can be known as Sudden Adult Death Syndrome. Mum’s always have a sixth sense when it comes to their children which is why mine insisted on making sure there wasn’t another reason my Dad passed away so young. My Mum first heard about CRY from the newspaper, she contacted them about our story and we were fast tracked for screenings at St George’s Hospital in London which is where we have remained for annual non-invasive heart tests.

Last year, I turned 20 years old and the clinic decided it was time for me to have an Ajmaline test, which diagnosed me with Brugada Syndrome. Following my diagnosis, I have created a blog called Brugada Syndrome Diaries to write about my story. This was to let others know that having a heart condition can be scary at times but I found strength and comfort in knowing I’m not alone and that’s what being involved with CRY has made me feel.

I contacted my local secondary school in hopes they would be able to facilitate a fundraiser day for CRY. This was about two months in advance of when I was planning the event to happen so there was plenty of time to order posters from CRY and have A LOT of practice tests with the cakes! Luckily my Brother still goes to this school and his lovely head of year got back to me and we began throwing ideas back and forth and it eventually came to a two-day bake sale for years 10 and 11. The bake sale was open to all years, but the awareness video I then created was aimed for the two eldest years. This was because CRY’s heart screening programme is for those 14-35 years old, so this gave me a target audience within the school to work with.

When preparing for a fundraiser such as a bake sale, make sure you practice again and again just to make sure there is no slip ups! It’s a good job everyone in my family has a sweet tooth because I practiced my cakes that many times I don’t think they’ll be eating anymore cupcakes anytime soon! I knew that I was catering for potentially a lot of people so around 40 cakes were made each day I had the bake sale and that is a lot of work to do by myself. So, I recruited some help, one of my friends Natalie who actually attends sixth form at the school and also my Mum, who both iced cakes beautifully and a lot better than I was doing them! Both days I sold out of cakes and to be honest I never expected to sell out completely on the first day let alone both! I did also make a video which was circulated around all of the tutors who were supposed to show it to their group of kids just to raise some awareness for CRY and the amazing work they do. I decided a video was the way to go because it encourages active engagement within that age group, I wanted it to be something they actually paid attention to and learnt from.

For the bake sale to be such a success meant so much to me because I have raised some money for the charity that has done so much for me and my family over the years. I have raised a total of £78.72 which for a local secondary school in a village in the middle of nowhere is pretty good going!

If you would like to read anymore about my story, please feel free to visit my blog via the link to learn more http://brugadasyndromediaries.wordpress.com/

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624 Reasons Why by Joe McEwan

My name is Joe, and I suppose you could say I’m your fairly average 23-year-old man. I graduated from university with a

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