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Miriam and Mia were born with multiple fractures all over their bodies
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The doctors said, we don't know if they're going to live another day, another week, another month
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They had zero hope for the girls. And we almost lost them twice. Sorry
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Hi, you, baby. I love you so much. Fast forward four years later, everything that they're able to do now
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like from sitting up independently to like rolling. Bend your knees up. Now lift
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So even eating on their own, this is just huge. I have trust in my girls. That's why they made it this far
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And here's one for Miriam, and here's one for Mia. Thank you. What do you say, Miriam
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Thank you, Mama. Do you want some milk too? Yeah? Can you tell me about the condition Mia and Miriam have
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The condition they have is called osteogenesis imperfecta, and it's also known as brittle bone disease
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It causes them to have fractures because of the mutation in the collagen gene that they have
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There's several types of it. The type that they have is a little bit more severe than others
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It is very rare, especially because they're identical twins. Eating is the best part of their day
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Do you love to eat? Yeah? What about you? Do you love to eat
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Yeah? You eating that one? not only does it affect their bone quality and it causes it to be weak and fragile but it also
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causes them to have muscle weakness across her body so both girls weigh between 13 to 14 pounds
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and they are 25 inches the girls are like the size of like a an eight nine month old baby and
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i do that comparison based on their younger brother yusuf when he was younger and i would
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put them like all three next to each other, they'll all be like the same size
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Wow, you like your coat? Yeah. Give me your arm. Miriam is wearing a coat
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My husband and I were first made aware that Miriam and Mia were going to be born different
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at the 20 anatomy scan The arms and the legs they said that they were measuring a few weeks behind And I think I remember he said that the chest is going to be a bit small for the size of the body But why
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We're like, okay, so basically you're saying they're going to have some form of dwarfism. And they were like, yeah, okay, that's fine. But before they were born, they did also notice some
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bowing in their arms and legs. When the girls were born, they did x-rays and that's when they
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noticed they have fractures all over their bodies. They have fractures in their arms, legs
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and their ribs, they have fractures in their shoulders. They would basically say like
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we don't know if they're going to live another day, another week, another month. The doctors focused on keeping them comfortable
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and keeping them on morphine to kind of like numb the pain. They had zero hope for the girls to make it
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And we almost lost them twice. And they were still in the NICU
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Sorry. As a mom, you know, you cannot help but think, what did I do wrong
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Papa, you going to put her in the car seat? Let's go, we're going to go with therapy, and then, when we get back, okay
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Thankfully, you know, we got connected with the right people, and they connected us with
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the OA specialists, and I'm grateful for them. Slowly, we were able to go down on the oxygen
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So both girls were discharged from the NICU on January 17 of 2021
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Okay, bye. Bye. Graduating the NICU. We weren't able to really get very comfortable handling them until they were at least like five or six months old
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We had to keep them on pillows. We had to dress them from the bottom up
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Every time I come to change their diapers, it would be a bit tough, and they would cry, and they would get hurt
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It was super easy for them to get fractures. They would get fractures just from laying down and just not doing anything
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As parents, it's very hard and very tough to see them go through the pain that they have to go through
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Sometimes I go into the closet and cry I feel so overwhelmed and under so much pressure and I didn know if I was doing the right thing It was definitely an adjustment but that was basically like
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the new page to our story where like everything changed to the better. Alrighty
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Switch. We'll switch on our way back. Okay. You can be there and then Mia can be here. Alrighty
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We got them fully rotted this year, so they have rods placed in both of their humerus bones
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both of their femurs, and both of their tibias. We get an infusion once every three months
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It really helps strengthen the bones. They get a PT once a week, OT twice a week, and speech once a week
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And we also have them enrolled in aqua therapy. They've been getting physical therapy at this clinic since I believe it was maybe March or April of this year
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And just since then we've seen like a remarkable change, a remarkable progress with the girls
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The goals are to get their core muscles strong and get them to be able to do more things with their bodies
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whether it's sitting up independently or rolling or tolerating being more on their tummies
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and lifting their heads upwards, kind of like how a baby would do before starting to crawl
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So we've been working on sitting them up independently and sitting up on a hard surface, not just a soft surface
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So this is what Mia's doing over here, and she's working on reaching with both hands and trying to maintain the balance of her body
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You've got to use your muscles here. Ready? Bend your knees up. Now lift
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This arm down. You can do it. Just your legs. Push. Are you all done dinosaurs
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Two more. Ready? Okay. We can be all done dinosaurs. One more. All right. So I want you to..
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Good job. You did it. Fast forward four years later. with them getting the infusions, them getting all the therapies
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They're not on oxygen. They don't have feeding tubes. They can eat and drink anything
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They can sit up. They can move. They can roll. The last appointment we had with the OI clinic
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they did x-rays and bone density scans on them. They said that the results are 50% better than last year's
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They told me they were like it amazing how far they come And I told them yeah I know I have trust in my girls That why they made it this far Now I think that I have a much clearer image of what their life is going to be like down the road when they in their 20s
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I am confident that the girls will be able to be independent. And I think that they'll be able to have a good life
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My family life right now is beautiful. We're very blessed to have this beautiful family that we've made for ourselves
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I love seeing all the kids grow and have this beautiful relationship that they have with each other
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So Yusuf is now, he will be two years old next month
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He's still trying to understand why he has to be gentle, why he can't just hold a toy and throw it at one of the girls, you know
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or like why he can't just run and hug, hug them. But the older he gets, the more he understands
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I feel like whenever they do grow up, he's going to be this loving brother
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where they can always lean on, ask for advice, ask for help, for assistance
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And this is what my husband and I are working so hard on our kids
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to make sure they have this relationship. We don't want to just separate them because of their condition
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Do you love baby Yusuf? Do you love him? We hope that the girls feel very positive and feeling like they could accomplish everything and anything they want in life
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I want them, whenever they do grow up, to feel like nothing is impossible for them to accomplish
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We decided to start filming the girls' journey on social media. So when the girls do grow up, they see all the positive comments
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They see their own progress. They see that, you know, yes, I was born, you know, I struggled with this, this, this and that
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But look at me now. Look at where I am now. Our journey started with pain
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but I know it's going to have a really nice, happy ending for the girls
