Zoe Lush’s Brave Journey: Living with a Rare Bone Disease

Wow, she can have both of her legs broken and still look like a total boss and her sunglasses.

Zoe has broken countless bones.

We stopped counting because it’s pointless.

Does it hurt when you break a bone?

Oh yeah, Zoe’s condition is osteogenesis imperfecta, which means brittle bones, and it has nothing to do with calcium deficiency, which is the most common suggestion I hear from strangers.

Have you tried giving her calcium supplement?

You want to give her some milk.

Thanks, going to be seven years old, haven’t tried that Esp.

We were told it was a one in fifty thousand, a chance for it to happen to her.

She has a mutation in her DNA which causes her, oh I, and we were told that it was nothing that either of us did or have ever done.

Parents, Chelsea and catches the first- told something was seriously wrong during pregnancy.

We were doing a 4d ultrasound and they were able to see her multiple fractures that were fresh and healing already.

She had broken ribs, my arms and a leg for about six weeks behind what they should have been.

So they told us that she had a really severe condition and that she possibly wouldn’t make it until her birthday to play with, and specialists recommended or suggested that we could just terminate the pregnancy, but it was more than that to us.

It was our first child together.

We actually did contemplate the abortion that she was telling us.

That was the only thing that was huɱaпe, and then we were in a panic State.

There are a couple different types of oh I with different severa T’s, and so Zoey was misdiagnosed with the type 2, the most severe, and ended up.

Her genetic results told us that she had take 3

Oh I, which is still very severe, born in October 2010 with multiple healing fractures.

So was in hospital for a week before she was able to come home and her parents started to adjust a caring for their little girl.

When we were changing Zoey’s diaper in the beginning, it took three of us: one person to lift up her pelvis, one person to slide the diaper in and out, and then another person will hold her arms.

Because babies have a startle reflex and I was on arms duty.

I gave her just a little bit of room.

It was a quarter inch to an half an inch, and she startled into my hand.

It sounded like a broken chicken bone.

Her radius and Ulna just snapped one.

Oh, you’re head of you.

Zoey has enjoyed a number of painful surgeries, including one to stop her spine collapsing due to a condition called surgical kyphosis, which would cause internal decapitation.

A really interesting series of x-rays and scans for Zoey here in the first picture was one of the first scans that we got for her.

You can really see that the spinal cord is completely compressed back there.

Zoey has been in her neck brace from the ᴛι̇ɱe she was diagnosed with her cervical kosis, at about two and a half years old, and is still currently in it now.

At six years old, things were getting a bit easier for the family, for her being able to tell us: I just broke or no, you didn’t break me or hold on.

Please don’t move me.

Oh, you’re using your elbow.

Good job, that’s how much easier.

And a night today we came to to inkle Park to have fun at the wheelchair accessible playground.

It’s one of the only ones in Orange County that Zoe’s able to play on, because the ground is made out of foam instead of woodchips-

Our sand.

She, especially this playground, is able to do everything that the other kids are other than run on their feet, so she can race them just as fast in her wheelchair.

Hey, someᴛι̇ɱes I worry about her getting heard of other kids don’t know the extent of her condition.

Zoey has a big enough voice where she will tell someone: please don’t touch my wheelchair, please don’t push my wheelchair, and that’s very helpful.

We have prescription valium, prescription Hydrocodone, just in case she does fracture, and all of the splinting supplies to do it ourselves.

We’ve had batch and she was an infant.

We carry it with us in our bag everywhere we go, as well as regular physio to help improve her quality of life.

Zoey also has speech therapy.

She has some a little bit of like some special issues with her mouth.

She’s working to increase her clarity in her speech and also some her language, some of her word orders and things like that.

So that way she has more clarity when she’s speaking and talking to her friends and family, if they’ll even do speech with us today.

Okay, show me your s whoo.

You remembered it right away.

I like it, so he’s amazing.

She’s so fun

And she makes everything positive.

Oh, I does not give you a shortened life expectancy.

There is no cure for osteogenesis imperfecta for now.

I’m very grateful that there’s at least treatments, because even 20 years ago there wasn’t as ɱaпy.

Despite the challenges she faces, Zoe’s parents are confident that her tenacity and child will go into her bright future.

I would not change Zoey if I could take her-

Oh I back.

I would never ever take it back in the future.

I hope that Zoey has just as well of an opportunity as everybody else, you, you.

 

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