IDENTICAL twins Maryam and Mia were born with a rare form of osteogenesis imperfecta (OI), also known as brittle bone disease. The condition means their bones are weak and prone to fracture - between them, they have broken hundreds of bones already at only four years old. When they were born, doctors found multiple fractures from their shoulders to their legs and the twins' parents Rayan and Mohamad were told to prepare for the worst. As mom Rayan told Truly: "They would basically say, 'We don't know if they're going to make another day, another week, another month.' They had zero hope for the girls - and we almost lost them, twice." But after being referred to OI specialists, Maryam and Mia started to turn a corner and after several months in the NICU, the twins were finally able to go home. From then on, the twins' parents were determined to give them the best quality of life possible - Maryam and Mia have had various bones "rodded" with metal inserted to strengthen their bones and also receive regular infusions. But perhaps most importantly, Rayan and Mohamad enrolled the girls in every therapy available to them - and, four years on, Maryam and Mia are thriving: "They're not on oxygen, they don't have feeding tubes, they can sit up, they can move, they can roll. Now I am confident that the girls will be able to be independent." And now that the twins have a younger brother - Yusuf, 2 - Rayan is grateful for the "beautiful" life the family are building together. Although Yusuf is still learning to be gentle with his sisters, "the older he gets the more he understands" and Rayan is choosing to focus on the bright future that lies ahead for Maryam and Mia: "Our journey started with pain, but I know it's going to have a really nice happy ending for the girls."
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NewsTranscript
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.