Unveiling the Remarkable Odyssey of Beare-Stevenson Syndrome: A Comprehensive Exploration

What do you love most about your brother?

There’s something about him that no one can’t explain.

When its own season.

Then someone really gets to know they love him.

He has a charm.

I don’t know what it is.

Is there anything special about your brother?

Yeah, Power Rangers together

And then he Knight Ninja Turtles for his birthday and here a ninja turtle cake.

What do you want people to know the first time they see your baby boy he’s loved and that he spoiled, and that he has great parents and great grandparents, and great great grandparents and great siblings who all love them dearly?

Do you love King?

Yeah, How do you know?

Welcome to Sbs K. we believe that everybody has a story that’s worthy of being heard.

When we listen to one another, the world becomes a closer place and we all benefit together.

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

Please learn to love King and understand that he just needs care, that he must be told that you love them, needs to be able to feel physical things, yes, feelings.

I am smelling him and I kiss on the cheek, and I love him because I like him, King, Disney’s extra love.

You know all of our kids in the love.

I just think King requires just a little bit more loving, right?

Yeah, I’ll do anything for any of my kids, of course.

Yeah, King is just.

You know you just got to push a little bit harder with King.

Why it’s just so important to take care of your brother.

I just pull the urge to.

Whenever I see him like moving the messing up this year, they just feel like I’m gonna put it something there.

It’s like it’s like a huge.

I was like him when he was like me.

He would do this thing.

How does ebony look after King?

She knows how to suction him.

Um, she’ll sit in a room with them.

So if I have to get in the shower, you know she sits in there and she watches him.

Have you always had the desire to help your brother?

I didn’t know that I need it to that that was too young or that I didn’t need to do it.

But as I got older around- oh, eight or ten letting move that I need to start helping.

Or could my mom needed me to do?

You know if King needs to be suctioned?

If he’s like, I’d say we like wheezing where you see mucus coming from up his little trait.

He needs to be suctioned.

What’s your favorite thing to do with your brother’s cheek.

Why do you like to do that?

Because I know I need to do that.

He’s my favorite brother.

I noticed that you stroke Kings had.

Does that relax him?

Yeah, I think he knows that you know my touch.

So that’s just kind of like my way of let him know that I’m right here.

He can’t really see us.

They said that you have to be to his nose when order for him to see us.

But um that I think my touch just lets him know that you know Mom was right here.

What are some ways King shows you that he loves you.

Sometimes I come in his room, she’s she has like this little monitor.

When, like his, I think it’s heart rate.

Sometimes when it’s down and I come in there, or whenever my family members come in there, it goes up.

So he knows that we’re there.

What did the doctors tell you when he was first diagnosed?

That he would, um, live for a matter of seconds, that arm go ahead and, you know, spend a little bit of time that I would have with him after birth.

So those seconds turn to minutes, minutes turn to days or hours that I was turned today’s, the day’s turn to months and the months turn to six years.

Where are you proud of King?

For what do you mean?

We we wouldn’t really be the same.

You see, though, being, or, in periods, machines going off, you, okay, just won’t hear King.

You want me.

What do you change?

I can’t do this.

I really can’t go to sleep it all the silence in the house, cuz I’m usually used to hearing King of Kings nurses, and does it bring you comfort to hear all of the noise it does?

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