Practice English Speaking&Listening with: #31 Dravet Syndrome Awareness Day ～vlogに込める思いを語ります～[English subs]

June 23rd is the International Dravet Syndrome Awareness Day!

It’s the day that we encourage each other to raise awareness about this special day.

Just two years earlier and before this June 23rd, soon after Ray turned 2 years old,

I wrote a post about Ray’s disease for the first time

and uploaded it to Facebook.

It was the very first time I talked about Ray’s disease to people outside the family and close friends.

The reason I decided to talk about it openly is

because we had some troubles after moving to the new city we currently live in

due to the unawareness of epilepsy and Dravet syndrome around us.

It triggered my motivation to do something to raise this awareness.

The first thing I could think of at that time was posting something about Dravet on my FB page.

So, 2 years ago on June 23rd was the day that we began our journey to raise awareness of dravet syndrome.

Since then, I have been using a blog, YouTube channel,

and my Instagram account for the purpose of raising awareness.

Since then, I have been trying to raise awareness of Dravet syndrome and epilepsy in my own way little by little.

Nooooooo!!

The rest of it wasn’t filming!!!

[The next day]

Where did I stop yesterday?

Well, yeah, I guess I was saying that I’ve been trying to raise awareness in my own way.

R: Mommy! Open this!

N: How did it get inside like this?

Oh, I got it.

There is a lot of intentions behind our vlogs

though they may seem “ubiquitous” in purpose.

My strongest intention of these vlogs is for people to know

more about how families and their kids with diseases and disabilities normally spend their days

by watching our everyday life.

R: Tea!

N: Oh, thank you. It’s very good.

I want those of you who don’t have anything to do with diseases nor disabilities

to feel closer to people like Ray with a severe disease by watching our vlogs.

Thinking “Oh, they go to COSTCO and festivals!? They’re just like us!”

is exactly what I aim for.

One more thing is that for those of you who have a kid with a disease or disabilities just like Ray,

and especially if you just got the diagnosis

and are at a loss of what your life is going to be like in the future,

I know exactly what it’s like because I was there.

I had no idea where this disease was taking us

and was just worried and wondered if I would ever smile again

or we would truly enjoy our life.

Therefore, I want to send these messages

that despite the hardships,

it’s going to be OK and you can enjoy your life.

I’m really hoping to have you regain energy to look forward by watching our vlogs.

I also hope these vlogs could find their ways to raise awareness of not only Dravet syndrome

but also other intractable diseases and disabilities.

N: What’s this?

R: Pineapple.

N: A pineapple, thank you. How about this?

R: PAN. (Bread)

N: PAN. (You call “bread”, “pan” in Japanese, okay. lol)

I might look like I’m always smiling and having fun in the videos

but I still do have an emotional crisis once in a while

though I rarely cry nowadays,

so let’s remember that we are not alone!

Thank you for watching.

We’ve been in the ball pit like this

Bye~!