Dylan's Brugada Journey

My beautiful 20 year old son Dylan was diagnosed with an incredibly rare heart condition, just 3 weeks ago. The condition is called 'Brugada Syndrome' otherwise known as sudden death syndrome. We are lucky that this diagnoses has been made, however it has been an incredible shock for Dylan and our family, we are trying to come to terms with our new normal. Dylan has been experiencing episodes; goes extremely pale, shaky, laboured breathing an all together terrifying experience. As a mother watching my child go through this experience is utterly heartbreaking and I will endeavour to do everything in my power to support him. Discussions with online support groups have stressed the importance of having a portable defibrillator. Dylan was studying Aerospace Engineering at Swansea University with his heart set on becoming a test pilot, his first year results were very impressive and he was well on his way to excelling with his studies. This diagnoses has obviously made him reflect upon his life choices and studies, he is currently making enquires to change to Ecology, a lovely choice however an extremely tough one after dreams of flying a plane. This would be difficult for anyone but at the tender age of 20 is so tough to deal with. Dylan was and is a lover of the outdoors, he is a keen rock climber, surfer, skater and dedicated mountain biker. He was always off exploring on his bike, sadly this exercise is extremely strenuous upon ones heart. 

I would love to be able to buy a portable defibrillator to have in the home, this would allow for immediate care and support as well as reassurance for Dylan and the whole family. My other request for funds is to be able to help towards the cost of an electric mountain bike. I had no idea of the cost, sadly they are very expensive. This would enable my son to experience the freedom of the outdoors without any added pressure upon his heart.

Making this page makes me feel slightly uncomfortable because essentially I am asking people for money. However I feel compelled to support my beautiful kind son in whatever way I can. He is 21 at the end of April (20th)and it would be wonderful to have raised some funds by then. I am running a half marathon in October 2021 and I am planning on raising money for the 'Brugada Foundation', hopefully I  will be able to give something back.

Thank you for taking the time to read this, any donation will be so gratefully received with heartfelt thanks and love.

Bianka x