Navigating Crouzon Syndrome: Beyond Appearance, Embrace the Heart Within

Are you happy with who?

You are welcome to Sbs K. join me as I travel around the world, an interview individuals living with a condition to prove.

No matter how you communicate but what obstacles you face, you’re always deserving of love and acceptance.

So, without hesitation, let’s meet today’s friend.

When someone meets you for the first time, what do you want them to understand?

That cameras on people from around the world can see you.

What would you like to say of them to them?

That nobody, no matter how I look, no matter how I am, I’m a Harley- so soon that they would say to me the way you look- which that’s the most part of my coupons out to me, Iris.

Hey girl, I’m happy to your face.

Did you run?

What?

And I got my weight.

Right now I’ll give it up, I don’t care.

How would you describe your relationship?

Well, when I want to play or her engage in a good mood, yes, but sometimes in the morning I always wake her up and when I ask her to play, she’s always like, oh, he wakes up at 7, that way.

Now, a couple, what’s up?

What would you like to say to those people who made those comments?

Let’s say: listen, that’s your opinion.

That’s the way I look.

If you don’t mind, I’m gonna go, Sir, my way, and you’re better with your.

Anyway, thank you.

Or I would say: not sure, cuz that’s the first day when I got over with it.

Please don’t tell me that you’re making me else up, be real hard to say.

It’s thereby pleased that I got away to say what’s something you hope the world understands about your sister.

She’s just like any other person that makes you do everything.

What’s the toughest thing about being in the fifth grade?

Basically homework.

What would you like to say to those mean teachers giving you all that homework?

Hey, oh, yes, they’re not for me.

But oh, I was just joking, I’m sure they’re great teachers.

Yeah,

And I bet you’re an A student, aren’t you?

Yeah, I am a a to be sort of, but there should be a lot of for because I they really want me to learn more stuff than I do.

If you found a magic Genie lamp, it had one wish.

What would you wish for?

I would wish to have lots of new friends, and there are people- don’t be, by the way- who I really am, not, by the way, a look, do you fear that a lot of people judge you based on appearance?

No, I did at first, but now I don’t.

I really don’t care about those people, cuz what I’ve learned from my family or my friends- know people who actually know me- is that the people who don’t love me?

You’re wrong?

Yeah, right, what do you think your relationship will be like when you’re both adults?

I don’t really know, because we’re gonna be completely different things, cuz you gonna be a singer

And I’m gonna be a game designer.

That’s right.

My real dream is to be a sender and to be a chef, to be a consumer, elegant.

So for sex, you think your sister can do that.

Well, I know she could do three of those things.

Oh, good for that for now.

Now you can say yes or no to this, because I’m kind of putting you on the spot, sure?

Would you like to sing yes right now?

Yeah, Whenever you’re ready, okay, planet Ally, suddenly I run.

Aah, now I have the most important question of the day.

Everything has been leading up to this.

Okay, What’s your favorite flavor?

Ice cream, chocolate, Trinity.

Why do you like that ice cream?

Anna, let’s talk once.

I talk English and Spanish.

Could you demonstrate for me?

I don’t know English.

Yes, bear.

What did you just say?

I said, if you’re talking about two languages I talk, this is the three camp that are used to help me breathe.

Oh, that I can’t grab, I know,

But now I can.

This is that I’m willing to take it off there for a summer.

Oh, we’re working on it.

So you’ve been working on breathing through your mouth and nose and you’re gonna be able to do that.

Yeah, How’s it feel to feel a little awkward?

We’re and not something I’ve ever done before, but now I do it with.

Sometimes I do it with them, not even nobody seen which taught me.

So I’m getting used to it

And I think I might be pretty good.

So, probably for this summer, I might take this off.

When someone meets your sister for the first time, what do you want them to know?

I, I would like him to know that she’s a very unique person.

Nice, do you love your brother?

Beautiful?

What’s that tough for you?

Doesn’t it?

Say that word to him and come from better straight now.

I was born in 2006.

I my favorite food is rice and eggs, our pancakes, Antipa, every other food.

When somebody comes up to you, live for the first time, what do you hope they say?

Well, that because of that I can other self, because they, you know the way I look.

Dustin’s matter the what I said before.

But when it, uh, really do, you can, and I’ve never seen in my life,

Oh okay, that’s pretty.

The hey, don’t worry, I’m just a nice, kind hearted person who for in this way, not interfere, and then you say,

Oh okay, you hold my hand and we hang out together.

My favorite subject is math art.

A minute.

What about your least favorite subject, PE?

Why don’t you like PE?

This is a real three.

They make me run that mile every day.

That’s why exhausting.

But when I have to run a mile, a lap, four miles, dead about dogs or cats.

Does.

Why dogs?

Definitely dogs, because there is so cute.

For example, I had my dog back there at the pit.

He’ll, he’s so cute, he he sleeps a lot, I see he’s laughing old around for life to sleep.

He’s always happy, she’s always very positive and now he looks like the bright side of things.

Thank you, why do you always look at the bright side of things?

Because it always made me feel a little help at that.

I have on my head all the of these disguises.

I have something that’s called a baja, but just basically help.

Help me here louder than I used to without them, and those are pretty good too, right?

Or don’t review that meter.

Well, can’t help us get some, because you’re really helpful or really good.

When you look into the mirror in the morning, what do you think?

Yeah, I see, okay, ready for a test day.

Yeah, That’s all I say.

And Dad, it comes apart where my brother taking me out of bed and force me to play with him.

I went to my cousin’s house and she invited someone over and there is the little girl have never met me before and she started crying: don’t stop, cause he have never met a girl like this.

And then I say: what’s wrong with me without even asking to me.

Kenyatta laughs when people do that.

If someone wants to be your friend, what should they do?

They send out with me.

Ask me some questions why they should be my friends.

Not because of this, yeah, the most.

I came to us and they see I’m a good person, even though there is up dad, they start to be my friend.

Hey, hey, the Uni aim down tomorrow.

Yeah, give me your phone number.

Yeah, That’s how I got my BFF.

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