A Space in Time

Yeah, how are you mate? Are you all right?

You're tired aren't you?

Daddy's gonna carry you, mate.

That's not a problem.

You've done really well.

Wow, Look what's overhead.

It's from the...

I wish it didn't exist.

I wish it didn't exist as well

to be honest with you mate.

What is it then?

It's a disease.

It's a disease, of what though?

What disease is it?

Is it the brain?

What is it of?

Of the body.

The muscles in the body.

Yeah, the muscles in the body.

and also some of the muscles are missing here.

Well, the muscles aren't missing,

the muscles are wasting, so what it's doing to the muscles

is it's progressively, which basically means

that it's kind of slowly wasting the muscles

and making them weaker and weaker.

Well, I run faster,

so I think they're getting smaller, maybe.

I kind of running fast, I think it's getting better.

I'm running quite fast, I think it might be getting better.

You think it's getting better.

Yeah, I still, might take a little bit more

'til I can run a little bit longer I think.

'Cause you know normally what happens

with Duchenne, right.

Normally, if you look up Josh and you look at Harrison,

as you get older, it gets worse.

Gonna tickle, tickle, tickle, tickle.

Duchenne, what does Duchenne mean to me?

It's my whole world really.

It's just always in the back of your neck.

It's just always creeping up on you.

The word itself is synonymous with my kids now,

'cause I think we spend so much time as a family

thinking about it and talking about it.

It's a fairly all encompassing word, really.

It's kind of our reality.

There's days when you live as a normal family

and suddenly something happens and there's Duchenne,

straight in front of you.

It's constant hospital appointments.

It's seeing your young sons not coping,

not just with their peers, but with themselves.

Yeah, it's not a nice word, Duchenne.

Practice makes perfect, buddy.

And I remember, really well, talking to Nick

when he first kind of came into my world

and his two boys were diagnosed and saying to him,

"Don't worry, it's gonna be okay.

"We're gonna find something and your boys

"aren't gonna have to worry too much."

And that was five years ago.

And not an awful lot has changed in those five years.

Well, I say not an awful lot,

massive amounts of stuff have happened,

but the one thing we all want is a treatment

and we're not there.

So that kind of sucks for me looking back at that

and thinking, "I've given bad advice there,"

but I still have hope.

I still believe we're gonna get there.

I believe we're gonna get there in time for Harrison,

we're gonna get there in time for Theo and Oskar as well.

So keep believing.

Okay, Theo's go.

Theo!

Ben's go.

Theo, your go.

Okay, my go.

No, it's my go.

Theo, penalty.

I'll go after you.

I don't think it is.

You don't think it could?

Yeah, I don't think it's going.

Then how are we managing to run faster?

They'll also be thinking,

you're probably spending more time

in your wheelchair now, aren't you,

with the electric chair and stuff like that.

Something smaller, because it used to be a little bit.

My feet went back to that size.

The size of my foot, I think it is getting better.

I think it is.

Don't you think it's getting better?

I don't think it is getting better.

I'm not being negative about it.

I'm just looking at, I'm looking at you

and I'm looking at...

It is getting smaller.

Well, the thing is it's not just...

I know you you see in most in your calves,

but it's not just your calves,

it's actually your whole body.

So like when you kind of get pains in your arms,

and you sort of get pains in your neck and stuff.

So what's happening is the muscles are slowly starting to

work less.

No, they're starting to work more

'cause it's getting better.

The leg's getting better

It's getting better Daddy.

I think that the stones, the pills you take,

the white pills you take, the stones, they're helping

but the syringe you take...

It's getting better then.

The other boys like Harrison and Josh,

they're taking those pills as well.

But Harrison, do you think Harrison's

is getting better or worse?

Worse?

Why do you think Harrison's getting worse?

Maybe I kind of think

I think he's getting it a little bit different than me.

He's kind of on the similar drugs as you.

He's had a few different trials,

but I think Harrison probably is getting worse.

And in terms of he's getting less strong.

Yeah.

I mean some people are going to get better,

some of them.

Yeah, yeah, I mean, look, some...

Can some of them get better, Daddy?

At the moment there's no cure for Duchenne.

So at the moment basically, there is no...

There is no special pill

for somebody like Harrison

that is gonna basically mean that Harrison

can get out of a wheelchair and not have Duchenne anymore.

I think for me now, how I feel about Duchenne

has probably changed.

After having lived with it for so long,

I've come to accept it

and everything that's positive and negative about it.

When I was in my twenties, I learned

about the social model of disability,

which basically talks about how you are more disabled

by your environment and by society

than your actual condition.

I think that was a really empowering moment for me,

actually seeing a lot of the difficulties

I experienced in day-to-day life.

It basically comes down to society

having designed things for non-disabled people

and not having thought about how to make things

inclusive and accessible.

So obviously Duchenne has its own issues and problems.

There's no social adaptations that can allow me

to hug someone independently, but there's so much

in my life that is restricted because of society.

But you got through that. Well done.

So I come this way.

I can't get up.

I can't stand up.

What I'm gonna do.

Here we go, ready?

Ready, ready, ready.

Ready, ready, ready.

Well done.

Yeah.

Look at you.

Theo, that was great.

Well done Theo.

Did you enjoy that?

Theo, was that fun?

How are your legs?

How are your muscles?

What'd you want to do now?

My arms are very tired and they feel like exactly

when my muscles hurt.

Pins and needles feeling, you mean that kind of feeling?

Should we go and rest a bit?

So, when the boys were diagnosed,

we didn't think first of moving to house

but trying to get our head around it.

Slowly, we started thinking, well actually,

the house we're living in is a very slim, very tall

end wing of a big old Victorian mansion

which had way too many stairs.

So we thought we've gotta do something here.

Theodore, he would fall down

in a somersault down.

We had really long staircase.

There was a need to move out of the house

we were in.

There was a real need to do that.

We started exploring other places, other areas,

but at the same time thinking we've gotta be still connected

to our former life in Epson

and still I've got to be close to grandparents

and that kind of stuff to have that support network.