“I think it’s important to raise awareness of EB because the greater the understanding the less difficulty people like me will face every day”

My name is Seán and I am 12 years old. Very shortly after I was born, my parents noticed blistering around the nappy area. They then confirmed I was born with EB simplex. My mom also has EBS so she knew what we were dealing with.

Football is my passion. I love football and I play for Moone Celtic & Klub Kildare. I also like playing Fifa on the PlayStation.

The biggest challenge me us is during hot weather, as the heat means I blister more easily. But we have learned to minimize activity as much as possible during this time. It can be hard to do so when all I want to do is kick a ball. Football and EB do not always get along. Depending on the time of year, I will recover quickly but if it’s a warm period, I could be in pain with blistering for a few days after. There have been weeks where I’d have two matches and three training sessions (GAA & Soccer) so it’s very important to make sure I rest as much as possible in between.

I began playing when I was 8 and I love it because I get to play in a team with friends. I enjoy playing tough matches and having a way to express myself on the pitch. It’s a beautiful game.

I am a huge is Liverpool FC fan and my favourite player is Luis Diaz. He is a brilliant player and so skilful. I play in the same position as him, so I always want to play like him.

Right now, football is everything to me. I eat, drink and sleep it! I also enjoy playing GAA. Sports overall are a huge part of my personality.

I was also named player’s player of the year. My parents were so proud of this as I was able to not let EB stand between me and my dreams!

I think it’s important to raise awareness of EB because the greater the understanding the less difficulty people like me will face every day. For example, schools understanding that I might not be able to do certain activities or my friends understanding why I’m not joining in or limping.

Debra has been a big support to me and my family and the nurses have always been so kind and understanding about my condition. I really hope there is a cure for EB soon.