Illuminating Darkness: A Blind Albino’s Resilient Journey Through Rare Disorder and Hope (Adopted from an Institution).

Hey, I am ready. 

Are you ready?

Kill me to bring the camera in.

Okay, alright, this is gonna be so epic and so fun.

Ready, I’m ready.

Tell me about the first time you saw Johanna.

So we adopted Johanna from China two years ago and we met her the first time Social Welfare Institute in China.

 

 

They brought her to us from her orphanage and she walked into the room with just the biggest smile on her face, just happy.

How do you feel we are friends?

Yeah, We’re super friends way away.

I’m so happy we’re friends and I’m so happy I get to spend time with you.

And I’m so happy you’re happy.

A lot of the other kids were screaming and crying, cuz they didn’t know what was going on

And they were scared.

And she just was happy, you know, and just came right over to us and asked and grabbed her hands and pulled us over to a slide that was in the room.

She just wanted to go play.

Yo Yo Yo Yo Yo, I’m ready.

You owe me to do it.

Oh yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo,

Yeah,

Yeah,

Yeah,

 

Yeah, when my parents asked me if it was alright if, um, we were gonna adopt a child, I said yes, just as long as the kids younger than me.

Why do you say that?

I wasn’t tired of being the younger one?

I just wanted to have a feeling of what it would be like to be an older sibling house.

He is in your house.

No, I know he is.

Is he your friend?

Mm-hmm, he’s your friend.

Yeah, What Bezier cats.

I’m happy I’m your friend.

Yeah, he always wants to go, or I am, even if I’m doing something that would probably get her hurt, like skateboarding, she always wants to.

Any time I leave my skateboard unintended, she always tries to ride it.

Do you like being home?

Yeah,

Yeah, What’s it like for you to hear her say that it’s just?

It makes my heart happy, just knowing that she does see this as home

And she understands this is, this is home

And she she loves it here.

Huh, this is our house.

 

Yeah, This is.

Is this job on this home?

My mom and mom.

I know Chris is home now to budget more stuff.

What are we gonna do?

You know you pass.

You want me to do the Yo-Yo, but I’ve done that so many times.

Will you?

Will you do Yo-Yo.

Oh yeah,

You do Yo-Yo at all, dance.

I need you to do it like this: Yo Yo, Yo, Yo Yo, your turn.

No, come on, do it for your old buddy, your old buddy Chris Yo Yo, how about this?

I say yo, and you say Yo Yo, he’s not any different than any other kid.

She likes to play and loves princesses and trucks and everything else, just like every other nine-year-old little girl.

Yeah, business, yes, princesses, she might not be able to speak as well as other little girls, but she’s just like every other little girl.

If somebody wants to be Johanna’s friend, what should they do?

Just approach her, like you would anybody, and just say: hi, join in whatever playing she’s doing, no more, get more, more, no more.

Uh-huh, we’ll make you happy.

Oh okay, I’m gonna do in three seconds, in three seconds.

Sorry, please sit down here.

Three, two, Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo Yo, one two.

You did really good accounting.

I’m proud of you.

Why, Johanna?

 

 

I have a question for you.

Okay, do you love your brother?

Yes, Yeah, do you love me?

You just Kong right to us like she didn’t known us our whole life, and I’ll kind of expect her to be, you know, like hesitant, because she had never met us.

You know, like we hadn’t been there for her pretty much her entire life, but she came right to us.

She was like I was easier and just stuck, and that’s how it’s always been.

Did she poop you a lot?

Yes, Yeah,

I I do that to her a lot, and now she does it to me, but she does, oh, I don’t like it.

Yeah, am i ready though?

Ah, we like to refer to her as our little earthquake, our beautiful earthquake.

Wow, huh, because she, we did not know of a lot of her condition.

We did know she had albinism and therefore we knew she was probably gonna be blind, or legally blind, or have a visual impairment, but we did not know that she would have the genetic neurological disorder that she has.

So she rocked our world, but in a good way.

Even though she is unlike other people, she’s, she still wants to up, she wants to, she even wants to be treated like she’s just a normal person.

How do you know sometimes when a kid, just when she wants to go play with someone and they just kind of look at her weird

And they just run away from her, she can kind of tell that they didn’t want to play with her.

Yeah, but stay here.

How does he react to that?

She just tried to stand, stare and walk back over to us.

So her disorder is called fbx-

Oh 11 disorder.

It is a genetic neurological disorder and it’s fairly new in the world of disorders.

It’s only been discovered about seven or eight years ago.

To ask you a question, okay, one, can I ask you a question

And then we’ll count.

Okay, my question is: are you having fun, are we?

I’m happy you’re having fun and I’m happy that you’re laughing.

Yeah, wine.

I ask you one more question and then we’ll count what you want: a dance.

Okay, all we do know is that she was found wandering a market in China and was turned over to the orphanage at that time, and she was assumed to be about four years old.

So they don’t know her exact birthdate.

So they assigned her one.

Yeah, and she was in the orphanage from four until seven when we went over and adopted her.

But during that time we do know that she was most likely neglected just based on her behaviors.

Well, when she first came home, she would not get out of her bed unless you told her it was okay to, and we suspect that was because at the orphanage they’re not allowed to.

Some reports even, has you know, reported that children are tied to their beds there.

Why do you like dancing?

You want to dance and do Yo, Yo Yo?

Okay, it might be the most epic thing ever.

Are you ready for this one?

Kim Yo Yo?

 

Oh yeah,

Yeah, you know, because of her history in her past, she does have some days, the trauma that she experienced in her early years.

She has some bad days, but even on her bad days, uh uh, you know we may have a few tears, but then she will seek one of us for some affection and she just needs a hug and need you to give her some love, and then she’s right back to being happy and joyful.

Is your sister one of your best friends?

Yeah, I would say that why she just has an interest in everything, really.

So, if you want to do it the other thing, she’ll do it with you.

Yeah, there, are you comfy?

Oh, you’re cold, you’re cold, make it.

Do you need a blanket?

Hey, unit.

Oh, thank you for the pillows.

Hey, here put it there, one pillow here, one pillow there, pillows for everybody.

Nein, Nein, we’re going night-night.

Okay, we’re just playing.

Okay, knowing, dude bit, what is going night-night, she will put the covers over you and we’re going night-night

And then we’ll wake up about five seconds later and then go night-night again.

I’m super proud of her.

It’s, you know, knowing that the beginning of her life was a little rough and a little unsettling, and you know, unsure to know, that she can still be this happy and just continue to fight to move forward.

It’s just amazing to us to watch her.

Thank you, a question.

Okay, all right, sit down right here and you’re doing amazing.

Here’s my question.

Uuuugh, again, we’ll do Yo-Yo after the question.

Is that okay?

Oh, didn’t?

Do you want to show?

Oh, is that a camera?

No, thank you for show me the camera.

Okay, I have a big question for you.

Why can we ask my question and then we’ll do Yo-Yo?

Here’s my big question.

I’m having a lot of fun.

Is this your home?

Yeah, Do you like being home?

It was a house, danyoung, NACA, you can good night, net calculator.

Can we talk to Chris?

Did she pop in and verbalizing what she wants?

Oh yeah,

Yeah, She’s very confident sometimes.

There’s it okay, if I give her a piggyback ride, the end, the interview before I do that I’m going to make this?

No, not at all.

I’m gonna make this really high so we can end the interview with the piggyback ride.

I’m so glad we got to be friends today.

Shall our don’t we end with the piggyback ride Stayin, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo, Yo-Yo.

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