00:00Living with FOP is quite hard but I have my twin sister Lucy who has exactly the same thing
00:05and makes life a lot easier. There's only three sets of twins in the whole world that have it.
00:11FOP is a genetic condition where your body is slowly turning into bone and you're frozen like
00:17a statue. It's not lonely, we have each other, we can like talk to each other about it. It makes
00:23it a lot easier. We're a good team. You're late! Sorry. Come on in.
00:36If you could fix my hair I would be very grateful. That's fine. Thank you.
00:40Want to just do it in the kitchen? Yes. All right, perfect.
00:44FOP is a genetic condition where your muscles, tendons and ligaments all turn to bone if you
00:50bump them. So your body is slowly turning to bone and you're frozen like a statue.
00:57I don't really like that saying but it's kind of true. It just completely slowly takes away
01:02your mobility, what you have. So we just have to take every day as it comes and appreciate every
01:06day. And just live it. Yeah. There's only just over 800 people in the whole world that have FOP
01:12and only three sets of twins in the whole world that have it. Zoe would definitely be more
01:18affected than me but it's because we've had different injuries throughout the years. Zoe
01:24can't walk, she can't feed herself. This is how far I can reach. I can't reach up any further
01:30than that with both hands. I look like a robot. So Lucy helps me with a lot of tasks. She would
01:36help me with my hair and she would help me go into the toilet because I can't pull up my own
01:41trousers. And vice versa, I'm Lucy's taxi because I can drive and Lucy can't.
01:48So we make the perfect team, don't we? We are very grateful to have each other.
01:54Yeah, I know. It'd be very lonely if we didn't have each other, I think.
01:59Wouldn't it? It'd be quiet, it might be nice.
02:05Eight years old when we were diagnosed with FOP. You didn't have your first flare-up really until
02:10you were 10? Yeah. It starts really early childhood. It starts really, really young,
02:15like from birth, whereas we had a good length of time without anything, which I think...
02:23I think it's affected us both differently as adults because... We've had different injuries.
02:30So I've fallen and broken my arm and I've broken my leg so I can't walk but I use crutches and a
02:36wheelchair for longer distances and you can still walk and feed yourself.
02:45Lucy and I both create content for Instagram and we create content for brands and we just
02:50love taking pictures, don't we? The beach also has the best lighting.
03:01Our followers are the best. They're so kind and thoughtful and lovely.
03:04I still get messages like now, oh I've never heard of FOP. Thank you so much for
03:09educating us and everything else. So the word is getting out there and I'm really grateful for that.
03:21I'm not really sure what the future's going to hold FOP-wise.
03:25We're just going to love life and live life and just see what happens.
03:30Live every day, here it comes. I would say that the biggest life lesson for both of us
03:36is to be patient with yourself, with the people that are helping you.
03:41You have to just, this is my favourite saying, you just have to have courage for the things
03:46you can't change because if you don't you will drive yourself crazy, pretty much.
03:51You have to stay positive.
03:59you
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