Living with an inherited heart condition: a teenager's story

Becky Rosser

Becky Rosser, 14, from Wales, tells us about living with an inherited heart condition and what it’s like to be brought up by her grandparents after losing her mum and dad.

Living with your grandparents is very different from living with your parents. In many ways it’s harder; like having a different home to everyone else and not knowing what life would be like if we had our parents back. But if it wasn’t for our grandparents, my brother and I wouldn’t be where we are today. If they hadn’t agreed to take us in, the two of us might have been separated.

Having Long QT syndrome can be difficult for us to cope with. My brother loves football and is a big Chelsea supporter. He would love to play in a team, but he can’t. I love to run but when I do, my heart condition says, “No, stop.” The condition means our hearts can stop at any second, and having limits on what we can do can make us feel different. We have to take tablets every morning – it can be hard to remember, but we try our best.

They were teenagers our own age who don’t judge, who know how it feels. Now they are friends who will be there forever

Going on the BHF’s Weekend Stunner, for teenagers with heart conditions, was a very different experience. Before then, it felt like my brother was the only person I could talk to. Although there are other people, like our grandparents, doctors and teachers, they could never fully understand what we go through.

It was a weekend of activities with people who share similar experiences to us and understand what we can and can’t do. They were teenagers our own age who don’t judge, who know how it feels. Now they are friends who will be there forever.

No one wanted the Weekend Stunner to end. We were leaving our new friends, but we had all gained new skills – interacting with the group and being able to share our feelings. We felt as though we were part of something bigger, something better than anything you can think of.

Visit our website for teenagers with heart conditions

Read Becky's grandparents' story

Related publications