Connor's story - a Genetic Disorders UK / Jeans for Genes Day film
Morning. Hello. Oh, that’s nice. Hello. My name is Connor and I’m 15 and I’m in many ways the same as everyone else.
But there is one big thing about me. I’ve got Duchenne Muscular Dystrophy. I was diagnosed when I was 4 and I used to be able to walk but now I’m in a wheelchair. Duchenne Muscular Dystrophy is a muscle wasting condition.
So that means your muscles get worse as you grow older. What I like to do is think positive and never be negative because that makes me feel good. Vehicle reversing. Vehicle reversing. Thank you! The thing is about my family, it’s not just me who’s got it. It’s my brother as well, and I’ve got two young brothers. One is OK, and the other, Luke, has got the condition.
Sometimes I think mum finds it a bit difficult because she has to deal with two boys with Duchenne Muscular Dystrophy, which must be quite hard. As a family we work together and make things work, even though there can be some stressy moments. But that’s what all families are like. We have different kinds of mood swings.
Good days, bad days, disasters. Well Luke can be a character sometimes. He just runs around and gets hyper active and he’s just not bothered about the chair. It’s just something in the way, that’s all. He likes going through all my stuff, which annoys me, and he puts all his stuff in here and asks me to do different stuff like play Lego with him. And he always pesters me saying ‘oh, can you play this with me?’ I do seem to find my own way of playing with him, but sometimes it can be a bit annoying but that’s what brothers are about. But I do love him.
I love him loads. Mum, can you just straighten up a bit? Mum, tell me what happened when I was born? Well, when you were born you were a perfectly healthy 5 pounds 5 ounces baby, and there were no concerns about anything at that particular stage. It wasn’t until you were 4 years old that you got the diagnosis of Duchenne Muscular Dystrophy. Can you just explain the genetics of the condition? It was passed down through me, I passed it on to you, and that’s how you got Duchenne Muscular Dystrophy. Aahh, got you! Can you explain about my brother? Luke at the moment is 4 years old and basically he is starting with early symptoms, just like we picked up with yourself when you were that age.
The condition is progressive and boys with Duchenne develop at different rates. Do you want me to fix it? You know if I’m fixing this, you see this here, can you put it on the side please? Thanks. What would make me feel positive is if people looked beyond the chair and think of me like everyone else. And if I’m going to be positive I wish and hope everyone would be positive about disabilities.
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