Lazi’s inspirational journey with Treacher Collins syndrome and the radiant spirit of inner beauty

Her first surgery was the G-tube

And then her second surgery was a jaw distraction.

Do you know what that is? –

What is it? –

So it’s basically where they cut your jaw in half right here, and then they put this device and it kind of looks like a railroad track.

It’s how I explain it.

And they have like these little bars right here that come out and you twist the bars and it pushes your jaw down and out and it creates a gap in between your jaw, so new bone could grow, and it moves her jaw forward –

Why’d it come off? –

Do you help your sister a lot?

Yes – What kind of things do you help her with? –

Mostly like if her trache clears or she needs help doing something, or like she wants me to make food with her, or like help clean up her room.

What is Treacher Collins? –

It’s, I don’t know.

– I know, I know it.

What is it?

– Huh, I don’t know. –

She can understand the most complicated words that she’s trying to say, and it’s amazing.

– What is the best thing about being sisters.

– Because, like we hug because she’s my sister And play with each other in the room

And we can eat and and we can play with each other on the fort – Did you understand? –

No, could you tell me what she said? –

What’d you say, Lazi? –

I said that we love each other and play with each other in the room and we eat together and play on the playground. –

And she says: we love each other and we play together in the room, we eat with each other and we like- – Play on the playground. – Play on the playground.

On the playground together. –

Together.

How would you describe what it’s like to be the mom to a kid with Treacher Collins?

I love it.

I wouldn’t change it for the world.

She makes me so happy.

I look through windows that I would never look through if it wasn’t for her, you know, I would’ve never known what it’s like to.

I guess I don’t want to say this wrong, because I love all my kids, like with all my heart, you know, But with her it’s like different.

You’ve got to be very delicate with her.

You’re beautiful, huh. –

Yeah – Why are you so beautiful? –

Because – See, (laughs)

She knows She’s a diva.

She likes to model.

She likes to take pictures.

She loves glitter lip gloss.

She likes to put on makeup.

– Does she like posing in the camera? – (laughs)

Yeah, probably is gonna be a model when she’s older.

She loves to model and take pictures and pose and take videos and Tiktoks and

Yeah –

There you are.

Do you like seeing yourself? –

Yeah –

When you see yourself, what do you think? –

Mm, I’m happy.

– You’re happy.

Yeah – Well, I’m glad you’re happy when you see yourself.

Is it true?

You two are cousins?

Yeah – What is it like to be cousins? –

He kind of was messing up my room. –

He messed up your room.

Yeah – How did you feel? –

Mad, I was kind of mad. –

Tell me what he did to your room. –

He messed up my bed and my furniture and my decorations.

He pulled all my toys out and I had to pick them up and I got mad at him. –

How did she react when you messed up her room?

– She was mad.

And when we were playing, she was keep kicking me when my mom- (Lazi laughs) –

Even when you’re mad at Daniel, do you still love him? –

Yeah, I still love him.

– She’s very sweet, gentle, caring, but she’s also really feisty.

At the same time – You know what he likes:

Spider Man?

Yeah, he likes Spider Man, and guess what.

He has Spider Man pictures and I don’t like Spider Man. –

What’s the best thing about family?

– The best thing about family is you can just spend time with them, You can spend time with them, show love to your family.

And she loves to be hugged and cuddled and kissed.

All the time.

We tell each other we love each other like a million times a day.

– I noticed that you two are holding hands.

(girls giggle).

– Okay, stop, stop.

What’s it like to have a sister who you hold hands with? – Fun – Like this – It feels like really loving to me. –

What is love? –

It’s like a thing where people like love people and you like hug each other, do everything together.

 

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