00:00Miriam and Mia were born with multiple fractures all over their bodies.
00:03The doctors said we don't know if they're going to live another day, another week, another month.
00:07They had zero hope for the girls.
00:08And we almost lost them twice.
00:11Sorry.
00:15Fast forward four years later, everything that they're able to do now,
00:19like from sitting up independently to like rolling.
00:22Bend your knees up.
00:23Now lift.
00:25Even eating on their own, this is just huge.
00:27I have trust in my girls.
00:29That's why they made it this far.
00:31And here's one for Miriam.
00:33And here's one for Mia.
00:36What do you say, Miriam?
00:39Thank you, mama.
00:40Do you want some milk too?
00:42Yeah?
00:43Can you tell me about the condition Mia and Miriam have?
00:48The condition they have is called osteogenesis imperfecta.
00:51And it's also known as brittle bone disease.
00:53It causes them to have fractures because of the mutation in the collagen gene that they have.
00:58There's several types of it.
01:00The type that they have is a little bit more severe than others.
01:04It is very rare, especially because like, you know, they're identical twins.
01:09Eating is the best part of their day.
01:12Do you love to eat?
01:13Yeah?
01:14What about you?
01:15Do you love to eat?
01:16Yeah?
01:17You eating that one?
01:20Not only does it affect their bone quality and it causes it to be weak and fragile,
01:25but it also causes them to have muscle weakness across their body.
01:28So both girls weigh between 13 to 14 pounds.
01:32And they are 25 inches.
01:36The girls are like the size of like an eight, nine-month-old baby.
01:40And I do that comparison based on their younger brother Yusuf when he was younger.
01:44And I would put them like all three next to each other.
01:46They would all be like the same size.
01:48Wow.
01:49You like your coat?
01:51Yeah.
01:51Give me.
01:53Give me your arm.
01:57Miriam is wearing a coat.
01:59My husband and I were first made aware that Miriam and Mia were going to be born different
02:03at the 20-week anatomy scan.
02:05The arms and the legs, they said that they were measuring a few weeks behind.
02:09And I think I remember he said that the chest
02:12is going to be a bit small for the size of the body.
02:14But why?
02:15We're like, okay, so basically you're saying they're going to have some form of dwarfism.
02:18And they were like, yeah.
02:20Okay, that's fine.
02:21But before they were born, they did also notice some bowing in their arms and legs.
02:25When the girls were born, they did x-rays.
02:28And that's when they noticed they have fractures all over their bodies.
02:30They have fractures in their arms, legs, and their ribs.
02:33They have fractures in their shoulders.
02:34They would basically say like, we don't know if they're going to live another day,
02:37another week, another month.
02:39The doctors focused on keeping them comfortable and keeping them on morphine
02:43to kind of like numb the pain.
02:44They had zero hope for the girls to make it.
02:47And we almost lost them twice.
02:50And they were still in the NICU.
02:53Sorry.
02:54As a mom, you know, you cannot help but think, what did I do wrong?
02:59Papa, are you going to put her in the car seat?
03:11Thankfully, you know, we got connected to the right people.
03:18And they connected us with the OAS specialists.
03:23And I'm forever grateful for them.
03:25Slowly, we were able to go down on the oxygen.
03:28So both girls were discharged from the NICU on January 17 of 2021.
03:34Say bye.
03:37Graduating the NICU.
03:40We weren't able to really get very comfortable handling them
03:44until they were at least like five or six months old.
03:49We had to keep them on pillows.
03:51We had to dress them from the bottom up.
03:54Every time I come to change their diapers, it would be a bit tough.
03:57And they would cry and they would get hurt.
04:00It was super easy for them to get fractured.
04:03They would get fractures just from laying down and just not doing anything.
04:08As parents, it's very hard and very tough to see them go through the pain
04:12that they have to go through.
04:13Sometimes I'd go into the closet and cry.
04:16I'd feel like so overwhelmed and under so much pressure.
04:19And I didn't know if I was doing the right thing.
04:21It was definitely an adjustment.
04:23But that was basically like the new page to our story
04:29where like everything changed for the better.
04:32All righty.
04:36Switch.
04:37We'll switch on our way back.
04:39Okay.
04:40You can be there and then Mia can be here.
04:42All righty.
04:42We got them fully rotted this year.
04:45So they have rods placed in both of their humerus bones,
04:48both of their femurs, and both of their tibias.
04:50And we get an infusion once every three months.
04:52It really helps strengthen the bones.
04:54They get a PT once a week, OT twice a week, and speech once a week.
04:58And we also have them enrolled in aqua therapy.
05:01They've been getting physical therapy at this clinic
05:04since I believe it was maybe March or April of this year.
05:09And just since then, we've seen like a remarkable change.
05:12A remarkable progress with the girls.
05:15The goals are to get their core muscles strong
05:19and get them to be able to do more things with their bodies,
05:22whether it's sitting up independently or rolling
05:24or tolerating being more on their tummies
05:27and lifting their heads upwards,
05:30kind of like how a baby would do before starting to crawl.
05:33So we've been working on sitting them up independently
05:36and sitting up on a hard surface, not just a soft surface.
05:39So this is what Mia's doing over here.
05:42And she's working on reaching with both hands
05:44and trying to maintain the balance of her body.
05:47You've got to use your muscles here.
05:48Ready? Bend your knees up.
05:50Now lift.
05:52Keep this arm down.
05:53You can do it. Just your legs.
05:54Push.
05:55Two more. Ready?
05:56OK.
05:57We can be all done.
05:57One more.
05:58All right.
05:59So I want you to...
06:00Good job. You did it.
06:02Fast forward four years later,
06:04with them getting the infusions,
06:06them getting all the therapies.
06:07They're not on oxygen.
06:09They don't have feeding tubes.
06:10They can eat and drink anything.
06:13They can sit up.
06:14They can move.
06:14They can roll.
06:15The last appointment we had with the OI clinic,
06:17they did x-rays and bone density scans on them.
06:20They said that the results are 50% better than last year's.
06:24They told me, they were like,
06:26it's amazing how far they've come.
06:28And I told them, yeah, I know.
06:30I have trust in my girls.
06:31That's why they made it this far.
06:34Now I think that I have a much clearer image
06:38of what their life is going to be like.
06:40Down the road, when they're like in their 20s,
06:43I'm confident that the girls will be able to be independent.
06:46And I think that they'll be able to have a good life.
06:48My family life right now is beautiful.
06:51We're very blessed to have this beautiful family
06:53that we've made for ourselves.
06:56I love seeing all the kids grow
06:59and have this beautiful relationship
07:02that they have with each other.
07:04So Yusuf is now,
07:06he will be two years old next month.
07:08He's still trying to understand why he has to be gentle,
07:12why he can't just hold a toy and throw it at one of the girls,
07:16you know, or like why he can't just run and hug, hug them.
07:21But the older he gets, the more he understands.
07:24I feel like whenever they do grow up,
07:26he's going to be this loving brother
07:28where they can always lean on, you know,
07:30ask for advice, ask for help, for assistance.
07:33And this is what my husband and I are working so hard
07:37on our kids to make sure they have this relationship.
07:40We don't want to just separate them because of their condition.
07:44Do you love baby Yusuf?
07:48Do you love him?
07:50We hope that the girls feel very positive
07:54and feeling like they could accomplish everything
07:56and anything they want in life.
07:57I want them whenever they do grow up
07:59to feel like nothing is impossible for them to accomplish.
08:02We decided to start filming the girl's journey on social media.
08:06So when the girls do grow up,
08:07they see all the positive comments.
08:09They see their own progress.
08:10They see that, you know, yes, I was born,
08:14you know, I had, I struggled with this, this, this and that.
08:17But look at me now.
08:18Look at where I am now.
08:20Our journey started with pain,
08:22but I know it's going to have a really nice, happy ending
08:26for the girls.
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