Carys and George’s story – a Genetic Disorders UK / Jeans for Genes Day film

Hello, my name is Carys. I am 10 years old and I also have a brother, George, who is 13. We live with our parents in Derby. The thing about our family is we have a genetic condition called achondroplasia. All it means is our arms and legs are shorter than other people’s. Don’t go live…! And ACTION. What do you think of being a dwarf? Well that’s what we are, that’s our being. We’re not sort of 5 foot 6 with muscles or 6 foot 7 with muscles or whatever. We’re small…with muscles! What do you say if a child said ‘why are you small?’ We often hope to be able to say ‘well everyone is born to be different and we were just born to be smaller than most people’. Can you explain what achondroplasia is and how it affects our bodies? Achondroplasia is a flaw in the genes that make up our bodies. The main characteristic is the shorter arms and legs. The trunk of our body is normal length, it’s just our arms and legs are a lot smaller. All this bit is lowered to be my level and over there the sink has been lowered. And what we’ve done is make sure the oven is in the middle of the row so we can reach it to get things out. And what we’ve done is put the fridge, freezer, dishwasher and washing machine on one side because they are all the same height. It could be very dangerous to have a kitchen that’s not adapted because you have to stand on things all the time. It’s bad enough standing on things to get things out of cupboards. Our windows have all been lowered because when I was growing up I couldn’t see out of my bedroom window. That’s not very nice and we wouldn’t want that for our kids. This is my window. I can see out of it, I get a good view and I can easily get to my drawers. And I open… Same with these ones. My wardrobe is quite high to get things in, but I just use this stool. If you could change one thing about being a dwarf, what would it be? One thing I’d like to change is people’s attitudes. People stare at us because we are different and at the end of the day we do stand out. The thing with us is that it’s alright when there’s just one of us, but not when there’s four of us or maybe a few others. When you get seven then you have to be worried. You just turn around and say ‘sorry, Snow White’s not with us at the moment, it’s her day off!’. Everyone stares at us. There’s never a time where we just walked and no one stared at us. And I don’t really like people staring. Then they whisper to their friends and their mum’s and dad’s look and it’s really not nice. Some people ask my mum and dad why they are small. I think I’ve had a few little kids ask me. Has anybody asked you before? Yeah. Yeah a few. But mostly it’s just staring, and it’s mostly just the kids. And how do you feel when that happens? It still upsets us, doesn’t it? It still does get really annoying – it would help us is everybody was to stop staring. Can you explain about your parents and how they came to have you? Both our parents are normal height, or average height. We were just that 1 in 30,000 that had the achondroplasia gene. How do people get achondroplasia? It’s something in the genes. Now, I was born with the achondroplasia gene and it’s just one of these things that happens. What will happen when we have children? If you got together with a tall person the chances are it’s just 50/50. The baby is either small or tall. Dwarfism does have its ups because you can win at limbo because it’s easy, and musical bumps. And some rides mean you have to be under a certain height to ride. We’re under the height so we can ride. And when there’s a giant crowd I can get out easily because I can just crawl under people’s legs. I don’t know, I just wouldn’t change it. Even if someone gave me a million bucks, I wouldn’t change. But I’d keep the million bucks! And cut. It’s a wrap.

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