The 6-Year-Old Twins Everyone Mistakes for Babies (Brittle Bone Disease)

If you two could send a message to the whole world, what would you say? Do you want everyone to be happy? What makes you feel happy? What do you love most about your mom? I like to go outside bubbles like this. Are you a big girl? Yeah, but I'm small. What is it like to be twins? Why does it make you happy to be twins? Welcome to SBSK. We believe that everybody has a story that's worthy of being heard. When we listen to one another, the world becomes a closer place and we all benefit together. So without hesitation, let's meet today's friend. Who's ready for fun? Can I sit with you two? Here I come. How do you feel when you make a new friend? Are you copying me? Oh my gosh, I have copycats! I don't know what to do, they're copying me! Hey, stop copying me! Do you think this is funny or something? Hey, nobody copies me! Oh no, they won't stop copying me! Well, I'm going to say the goofiest things in the world. Ooga booga, cotton candy. Pickles, chips, and monkeys. Mia. Do you ever help Mary Ann if she feels sad? What will you do if she feels sad? If somebody wants to be your friend, what should they do? Hi. Are we friends now? When you meet a new friend, what do you hope they talk about? Can you say that again? I did not hear you. You like when people love your shoes? Well, I've noticed your shoes, and I have to say they are amazing shoes. You two have some of the best shoes ever. Do you like when people compliment your outfits? You have awesome shirts on too! I asked them, if somebody wants to be your friend, what should they say? And they told me that somebody should compliment their shoes. Do they take great pride in their outfits? They do. They love their outfits, and they love getting their hair done. Just don't put the same outfit again. Don't put the same outfit again? Okay, I won't. Do you like to wear different outfits all the time? Yeah. I want to wear my own Sophie Elf model outfit. Do you want to wear a different outfit for you? We can, maybe. My own outfit. Your own outfit. I love how you're expressing your opinion. Tell me about your dad. We play the guitar, and also we play cards. We play the guitar and we play the cards. Mariam, do you like playing the guitar and cards with your dad? Yeah. How do you feel when you do that? Happy. What do you want the world to know about your daughters? That they mean the best. Anything they do is pure heart. They don't know anything but happiness and having fun and laughing and smiling. It's been so much fun getting to be friends. Yeah. I'm not copying you. Are you copying me? No. Are you copying your sister? No, you're copying me. Uh oh, we have some copycats. I'm not copying you. Is it okay, Yuto, if I ask your dad about the way your bones work? No. What is their diagnosis? So their diagnosis is osteogenesis imperfecta, brittle bone disease. And it's basically, their bones are hollow and very fragile. And so they have to be very careful how they move. They can't put a lot of weight on their bones, which is why they have to have the wheelchairs and power chairs, because they can't really stand up right now. But in due time, the goal is for them to slowly start to get stronger. And maybe in the future, not in a year, but maybe in the future, maybe they can start to stand up and then slowly start to walk with some aid. But yeah, so right now they can't really do much in terms of walking. They crawl, they grab things, their muscles are getting stronger, their forearm muscles are getting stronger, their legs, their backs, their necks. If you put them in the water, they swim like a fish. But they are very quick whenever they're on the floor and they start to scoot. How old are you two? Six years. Who is the older twin? Me. Does that mean you get to boss her around? Yeah. What do you make her do? Share the toys. You make her share her toys? Do you like sharing your toys or do you want to keep them for yourself? Share the toys. Why do you like sharing your toys? Because she's my sister. They have osteogenesis imperfecta type 3 and it's one of the most severe types of OI. It causes them to have fractures. They can fracture very extremely easily. But with them being on a regular schedule of getting infusions at the hospital and getting physical therapy, occupational therapy, speech therapy and aqua therapy and having gotten rods, they have metal rods placed in their arms and legs, it has made living with their diagnosis much easier than three or four years ago. If you had one wish, what would you wish for? Two wishes. Two. Your one wish would be for two wishes? Yes. So then what would you wish for with your two wishes? Three wishes. Alright, so now you have three wishes. What are you going to wish for with three wishes? Four wishes. Then what are you going to wish for with four wishes? Five wishes. Then what are you going to wish for with five wishes? Six wishes. You just want a million wishes, don't you? Yes. Are you going to keep all these wishes for yourself or are you going to give them away? Keep wishes for myself. You're going to keep them all for yourself? Yeah. Away. Oh, so you're going to keep them for yourself and you're going to give them away. Who are you going to give them to? You're going to give me a wish? Whoa, that's a lot of snacks, right? Yeah. Can I sit back down? Yeah. I want to put some nuts. Everything is in there. Okay. You'll see it when you get to the bottom of the cup, okay? Okay. Can I see that one? You see it? Yeah. Tell me about their personalities. Can I have some? No, baby. It's all right. You can have it, my love. Can I have some? Sure. Thank you for sharing. Do you want me to eat it right now? The whole thing. Ready? The whole thing. The whole... Mmm. That's so yummy. Thank you for sharing your snack. You're welcome. That's very kind of you. You're so sweet. Yeah. They are very sweet. Both of them. They're very kind. They're very fun to be around. It's so easy for them to make friends and make people love them. It's something about the personality that really shines through. Boing. Oh, cheese. Golly. Cheese again. So happy. Cheese. And as much as I can sit here and say how similar they are, they are different. Thank you for sharing. You're welcome. Do you want me to eat it right now? Yeah. You are so sweet. That's delicious. So they're both great sharers, but how are they different? They're different with... I'm pretty sure you noticed when you walked in and you met them. She is more outspoken. Both of them are social. Both of them are outspoken, but at the first glance, she's more shy at first. She opens up to people at first. She's what we call a social butterfly. And then when she sees that Mia's comfortable with someone, she's talking to them, she's joking and stuff, then she's like, okay, now I can open up. So then she starts showing you more of herself, more of her fun, silly personality. Right, Miriam? Yeah. Da da da da da. Da da da. Do you two go to school? Yeah. What grade are you in? First grade. Yeah, first grade. Do you go to the same school? Yeah. Are you in the same class? Yeah. Do you sit together? Yeah. Do you like sitting together? Yeah. What are you learning in first grade? I'm learning about colors. Do you have a favorite color? Blue. Blueberries. Blueberries are delicious food and they're good for you. Do you have a favorite color? Yeah. I like chocolate. What's it like being able to go to first grade with your sister? Um, go, go, go down and go and eat some yummy. You eat some lunch together? Yeah. What was it like watching these two start first grade recently? It was emotional, actually. It was, because you have to understand, we came from a background of having teachers in the beginning come to the house. They were homeschooled in the beginning because they couldn't go to school. And then, you know, all the therapies, they would come home because it was very difficult to move them around. But after they got older, stronger, and the very first time the school bus came to pick them up, and I watched the school bus. Mom and I just watched the school bus go. We felt like our heart just was going with them. I was stressed, excited, and happy, but scared. Are they going to hurt themselves? Are the parapros, are the teachers going to hurt them? Are the kids going to hurt them? Are they, um, so it was just all these thoughts throughout the day. But ultimately, we were very excited for them. We were so happy for them that they got to start a new chapter in their life. Do you two sit close like this a lot and hold hands? Yeah. Like this. Why do you like sitting with your sister like that? Are these two always together? Always together. What's that like for you to see? It's beautiful. It helps when you have someone that's like you, where you don't feel like you're alone in this world. And obviously, Mom and I are always there for them. But whenever we close the door behind us, when it's time for them to go to sleep, it's just them talking to each other, knowing that we're here, we're together, we have the same thing, and I'm by your side and you're by my side. That's, that means a lot. Do you two like doing everything together? Yeah. Why? Because we, we, we spend it. Do you two ever argue? No. Uh-uh. Have you argued one time? No. You said yes and you said no. What did you argue about? She didn't give you the monkey? Is the monkey a stuffed animal? Why didn't you share the monkey? Because, because he had it yesterday. You had the monkey yesterday? Was it her turn with the monkey? It can be tough sharing sometimes, but it's important to let others have their turn, right? Raise your hand if you agree. They do fight whenever it comes time to playing with certain toys. I heard about this monkey toy? Yeah, during certain things, but, but at the same time, they can't live without each other. So whenever one of them is at the hospital for, for being overnight, the other is just, where's Miriam? Is she okay? Or where's Mia? Is she okay? And they just can't sleep and they're off. You know, they, they laugh, but you can tell it's a forced laugh. It's a forced smile. And they just, they can't live without each other. Do you know how many fractures they've had in their lifetime? If you have more fractures than you have more bones in your body, it's a lot. You know, I can't count, but it's a lot. You know, since they were born, they had fractures all over their body, both of them. And, you know, a lot of times as babies, they would just be laying down, not moving, and they would just suddenly have a fracture for no reason at all. So it's kind of hard to count them. But I would say each girl at least got maybe, up until now, maybe like 50, 60 each. Maybe it's more, because a lot of times we would go and get x-rays, and we wouldn't even know that they actually had a fracture. Do these fractures cause pain for them? Yeah, it does cause pain. But I feel like their bodies kind of like get used to it. You know, like if I was to fracture, I can't imagine the level of pain I would be in. But whenever we would go and get some x-rays sometimes, and they would detect like, oh, you know, she has a fracture here. She probably had it like a week or two weeks ago. And I'm like, she never cried. She didn't show me that she was in pain. They're like, well, you know, maybe it didn't hurt her as much. All right, girls. Are you ready? Yeah. Are you ready for the funnest part of the interview? Yeah. I wanted to come sit here so I could look you right in the face and make silly faces. Are you ready? Yeah. And something that I do a lot, and I don't mean to do it. It just always happens, and it's so silly, is sometimes I just fall over. And I'm really hoping I don't fall over today. But once in a while, I just randomly fall over. Okay, I'm back. And I tend to fall over when somebody sends a gust of wind my way by going. It knocks me over every time. I really hope nobody knocks me over today. Oh, my goodness. Oh, no, they're blowing me over. Do they ever mention that they're different than their peers physically? They don't mention that they're different, but they do mention that they tell me like, you know, I can't walk. I can't stand up. Look, I got bacon. Good job. Oh, you want to feed it to me? No, it's all right. You can eat it. But, you know, they do notice those things, so I tell them that's why you're in therapy. We do these exercises so you can get stronger so one day you can do it. And then they tell me, you know, but I can't walk. And I'm like, right now, yes, you can't, but you do have a power chair that helps you get around just like, you know, what you do with walking. So, and then anything that they see their friends do, it's nice because we try to have them do it too. So, like, at school they have something called adaptive PE. So, yeah, they can't play baseball like we do, but they have such a cool way of them. It's like a huge baseball bat that would come here and they would just like hit the ball with it, so that's cool. Do you girls like being silly? No? I have one question before we're silly again. If somebody wants to be your friend, should they be serious or silly? Silly. You like when people are silly? Yeah. If there's a mom or a dad who wants to teach their child how to be friends with Mia and Maryam, what would you recommend that parent says? Just be gentle. That's all. Now I have one more question before we're silly again. Are you ready? If you could go anywhere in the world, where would you go? Up. Up? You want to go to the sky? Yeah. What would you do from the sky? Um, fly. Where would you fly to? Up at the sky. At the sky. What would you do when you're flying in the sky? It's clouds. You would fly to the sky and go in the clouds? Yeah. What do you think you would see in the clouds? Cotton candy. Oh, I love cotton candy. Yeah. Whoa! You knocked me over. The goal for them whenever they do grow up is to be as independent as possible, so getting them to power chairs now and having them in therapy as early as we have them in it, which was basically when they were at the hospital. We never stopped. Um, it makes a huge difference on their lives, and one day we imagined that, you know, each has their own apartment, you know, they move around, they cook, they clean, and if they do need help, then it's just minimal help, and, you know, that's why my husband and I, we are, you know, working from now to make sure that whenever they do grow up, they have everything they need. Whoa! I can see you. Here's a rock. No, don't throw a rock at me. Don't! Oh! Oh, my gosh. They're throwing rocks at me. Oh, my head. I'm bigger. Maybe bigger. Yeah. A bigger rock? Yeah. Well, guess what? Hmm? I have a snowball. Take this. No. Take this. No, I'm a bad guy. You're a bad guy. I'm a bad guy? Oh, no, don't get me. Try to go through. No. You can't go anywhere. I can't go anywhere now? No. You're stuck. I'm stuck? Yeah. You're in jail. You put me in jail? Yeah. Oh, no. Why did you put me in jail? Because you're a bad guy. Oh, my goodness. You figured it out. I'm a bad guy. You gave me some soup? Yeah. Oh, thank you. You know, this jail's not so bad. They give you soup here. What's that? Oh, soup again. Mmm, that's yummy. There's a snake in my soup? Yeah. Oh, you put a snake in my soup. Oh, my goodness. It's in your tummy. The snake's in my tummy? Yeah. Oh, no. It's eating your tummy. The snake's eating my tummy? This is the worst jail ever. Mia, I noticed you have a dollar in your pocket. Do you get an allowance? Tell me about their allowance system. So, their allowance is every single day, they get a dollar each. So, at the end of the week, they have $7 each, and then they have two choices. Either they can combine their money, which is now they have $14. They need something worth $14, whether it's snacks or toys. Or they can do their own thing. They can buy a toy or toys or snacks. That's the price of $7. Do you know what you're going to get with your allowance money this week? Twizzlers. Twizzlers? That sounds yummy. Can I be free? I've been nice since I've been in jail. No. I'm still in jail? Yeah. How long am I here for? 100 minutes? Yeah. Okay. What was my crime? What did I do? I took a bag? Yeah. What was in the bag? I took a bag of makeup and I put it all over my face? Yeah. Okay. I guess I deserve 100 minutes in jail. As long as I don't have to eat any more soup with snakes in it. Oh, snakes! What did you put on me? Oh, good. I love cupcakes. Oh, you threw a cupcake all over my face? Oh, you got me. Did you have fun today? Yeah. What was your favorite part? Dancing and doing silly faces? Should we do it again? They are always happy because we make sure that they're always happy. And if they are ever not happy, we always try to accommodate them to always make it up. And Miriam and Mia? Miriam and Mia? I want you to be honest, okay? Do you have an easy life? Yeah. Do you have a good life? Yeah. Does mama and papa do the best they can to make you happy? Yeah. Do you eat whatever you want to eat? Yeah. Do you do whatever you want to do? Yeah. Okay. Does she always boing you? Yeah. How do you feel when she boings you? Do you like the boing curry because it makes her laugh? Yeah. Boing, boing.