Unlike when I was a young child, I love to take part in caring for Connie, I find it so rewarding. I’m very protective of my sister and I know that by caring for her properly I am helping her in her everyday life. I feel proud knowing that however hard it is, I can look after Connie independently. My parents are amazing with Connie and I guess I always think that by helping out it gives them a little break.

I never thought of myself as a young carer growing up even though I knew my home life was very different to all my friends. They went home to relax and do the things they wanted to do whilst I went home to find Connie causing chaos. Throughout my teens I helped with toileting, bedtime, getting dressed and getting washed – it was just part of normal life. But being young and not understanding Connie properly was hard. I often resented other family members and friends for the life that I thought they had. In school, I received very little support and although I found it easy to talk about Connie to people, I never felt like anyone understood. At the moment one of us stays in her room each night to make sure that she is safe if she has a night seizure. With the seizures happening, caring has become so much harder. We have a big family so we do get the chance to have small breaks, but life with Connie is constant.