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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.
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.
So this place came along,
it was a good distance from where we were
and also offered something very different.
As we have to face to move
because of the boys' condition,
we decided to create kind of floating space
so the garden becomes part of the house,
the house becomes part of the garden
which is of course really difficult.
Bungalows costs lots of money because of the land.
We very quickly realized when we bought this place
we'd bought it for the setting and for the garden for land.
But the house itself was pretty screwed,
it was in a pretty bad way.
The garden was great,
but the boys couldn't even walk in a garden
because the grass was so laid out.
It hasn't been looked after for many years.
So we had to tidy up the garden was easy,
but the house was the different story.
We had mushrooms growing in the outer wall of the bathroom.
We had leaks through the ceiling, through the spotlights.
We kept fundraising for Harrison's fund,
but Nick had another fundraiser ready.
I said, "Look, we need to start fundraising for ourselves
"because we have a roof over our head.
"But in horrible conditions,
"the boys are slowly getting worse."
And so Nick had this crazy idea to run 20K a day
for 20 days in December.
And he told me that it's not going to affect family life
because he's going to run before work,
which is impossible.
That's day nine over, I'm tired.
11 more days to go.
20 kilometers for 20 days every day,
which basically I didn't raise enough money.
And I spent all the time before that raising money
for Harrison and Sonia for medical research.
So this was kinda the only fundraiser I'd done
where I'd thought.
Well actually we've got to raise some money for the house.
That kick-started it in terms of it meant
that we could pay for architects
and we could pay for engineers and stuff like that.
But I was rapidly thinking how are we gonna do this?
I met the family around two and a half years ago
when they first had been referred to shooting star hospice.
And I was introduced as a carer for the Theodore,
but looking after Theodore and Oscar sometimes together.
We had really good relationship
and we build up good link between boys and myself, I think.
I will be work hard like an ant.
There's plenty of cards.
Today I will be strong.
Teach me.
If they don't go the hard and the fluffy bits
that they will fall down like this.
Like I said, everything is taking space.
And so using twice a week, is it more?
One day Clara and Nick came to Christopher's
and they told me about the project of building extension
for the cottage.
And they asked me from the professional point of view
what equipment and how the building should look like
to improve the quality of life for Theodore and Oscar
in the future.
I think the best way to show them was to walk
along the Christopher's and show accessible bathroom,
accessible rooms with hoists.
It was quite important for Clara and Nick
to see how boys' life might look like
in the next 10 or 15 years.
I remember Clara one moment burst into tears
because she didn't really realize
the boys will be fully dependent on hoist
because they're not gonna be able to walk.
The quality of life is important.
If we plan and improve the extension for the boys,
the life for them will be much easier.
We've been chatting about how the rooms should be located,
how the bathrooms should be located and where.
I know about problem with finance
and I know problem with space and time.
I try to advise in the best way.
He raised some money
but also mainly he raised awareness.
He raised the awareness of his friend, Sarah,
and she said, "I'm working for Ballymore,
"I think I could help here."
I hadn't seen Nick for a long, long time
and I saw that Nick was actually gonna start
doing some charity work by running Marathons.
And the reason for what he was doing it for
was for Duchenne muscular dystrophy.
First and foremost, I sort of looked it up
'cause I didn't really know what it was.
And then when I looked it up and saw what it was,
I was extremely upset because I hadn't seen Nick
for quite some time and myself because I unfortunately
was unable to have children.
It sort of really, really touched me because I've known Nick
for a long time and myself and him have gone through things
in the past with our own health.
So I then mentioned this to Peter who is now my husband
and Peter works at Ballymore
and he's the UK Construction Director there.
And I said to Peter, "Look I just need to talk to you
"about something and is there anything
"we think that Ballymore as a company is able to do."
And because Peter is a father himself and he has three boys,
I think he then read about it and it really hit him.
Once you get involved in this sort of situation,
you do become terribly engaged with the kids.
You can only feel for Nick and Clara
in terms of the situation in which they find themselves,
in terms of having to contemplate the loss of children
in advance of themselves.
So that was a big driver and why we did it.
Obviously when we heard the plans of why Nick and Clara
wanted to make the extension and design sort of way
about the use of the building post the boys
and the respite arrangements.
And that that was just another huge driver to say,
well, that's a really good reason to make this happen,
to try and deliver something that the boys would enjoy
and see through their lifetime
and then would have a future use going forward
for other suffers of the condition.
I then phone back up to Nick and said to Nick,
"You know that you're doing everything with the house."
And he said, yes.
So I said, "We'd like to help."
And I think when you hear someone would like to help
as a definition of wanting to help
and actually do it all for you.
We used all of our sub-contractors who were working
on different projects all over the place
and we pulled that resource and just plucked them,
out of that site and popped them down to here
for two weeks, three weeks to just get bits of work done.
As soon as they saw what the project was about,
they saw the family, they saw the kids,
it was full engagement from everybody,
every single one of them engaged and fully delivered.
And there was a multitude of them, a multitude of them.
We used contractors from every site
on the entire supply chain of the business.
So it's been a huge team effort, huge team effort.
So I got a new house and we didn't wake up,
the kitchen door will always be open, daddy.
Exactly...
Always open.
Also our bedroom door is gonna be always open.
Yeah, so that door, that too.
But I don't want to get work
so I won't be able to get to your bedroom
when I need a cuddle.
And my bedroom door is locked,
I won't be able to get there, daddy.
If the door is locked
and I need a cuddle, I won't be able to daddy.
'Cos cuddles are quite important, aren't they?
Cuddles are very important.
We had a massive amount of help, 30 different contractors
worked on this whole project.
The whole thing relied upon vast amounts of goodwill
and also lots of very hard work.
We would never be able to do this kind of project
without the help of Ballymore.
And it's really amazing because I believe
that it's really important for the boys
and our bedroom to be on the same level
so they can easily access our bedroom if they need to.
I can't imagine if one of us lived upstairs,
they will never see, in a future how the mum or dad live.
What the Goodwill gave us,
they gave us the ability to dream
and it enabled us to really create something
almost purpose built for two boys with Duchenne
and in turn, two teenagers with Duchenne
and in turn, two young men with Duchenne.
It's future-proofed and back to the whole gift thing,
I think for Clara and I now, it's about ensuring
that the house is available to other families.
So whenever we go away and even if we don't go away,
it's an open house, it's perfect for anybody
at any age with a serious disability
because that's what it's built for.
We've wonderful bright light there.
All the way around, keep on going around.
And that guys, is our home for the last eight months,
30 square meters.
It's pretty compact living.
This is about as wide as this lens will go.
Almost killing myself.
So there we go.
That is pretty much the whole cabin.
So you lived on this cabin for a while.
Oh yeah.
Just talk to me about what that was like
living in such a small space with the whole family.
I don't wanna go there.
When the building work started on our house,
when Ballymore stepped in and started digging,
we had to plan where to move.
I was looking for a few houses to rent,
but it's difficult to rent a house on top of mortgage.
And also Oscar has been really unsettled
with all the moving in between and stuff.
So we decided to build a cabin in the back of the garden
and live there while they're doing the work
for six months will be the right thing to do,
but it took longer than that.
So we've been in a cabin for 13 months.
I don't really like to even go there, in my, back there
in my own head.
It's been beautiful, it's been tough.
It's been full on off-grid living.
So we build the smallest cabin we can build
without planning permission with outdoor bucketed toilet
and outdoor shower, which meant to be warm,
but it's been lukewarm.
And in the minus 10 last winter, it's just really cold.
Is this your room?
Yes.
And where's your bed's gonna be Oscar?
In that bit daddy.
Which bit?
In this bit.
That's the door, isn't it?
That's a side door isn't it?
It's just more easy for wheelchairs to move around
on a flat surface.
Well done mate.
There was always there as if we're moving,
we need to move closer to nature.
And it worked because we are five minutes walk
from Headley Heath.
The nature is very big part of it
because it's just beautiful.
I think everyone thrives from nature
and for the boys to have it on their doorstep is fantastic.
Part of the conversation I had with Sarah and Peter
was listen, "If you do this for us as a family,
"then it gives me more time to fundraise."
If we have the gift of this house, it's up to me
to continue to do what I can within the Duchenne community
to try and help that search for a cure.
When you do plastering, you need...
Oh yeah, but you need to be really, really smooth.
It's a real art form Theo,
It's really hard to get it perfect.
Why did you do it on the floor, why?
Why is one there?
Well, you know, the whole house is gonna to be a level.
Ziggy basically means that it's gonna be perfect
for you guys with wheelchairs and stuff.
That's the plan.
For wheelchairs.
For wheelchairs, yes.
So why is for wheelchairs, why?
Well, it just means that if you're in the house, Oscar,
you wanna sit in your wheelchair.
And in the future, you want to use it more.
You have to go over there.
So, this will be in the future, will be a carer's room
'cause when they get more disabled in the future,
they need to have machines, ventilator machines.
And they won't be able to turn over in bed.
They won't be able to rollover,
so they'll need help at night
so that's what that's for. A carer's room.
It was in my early twenties that I first started
using a ventilator, but that was only overnight.
I was at university at the time,
very much enjoying the university lifestyle.
Then when I got the ventilator suddenly like,
Oh every night you need to now put this breathing machine on
and put this like mask that covers your face.
It made you aware that you were suddenly dependent
on a machine to breathe.
And so I think it was quite a dramatic shift.
What are you doing?
Oscar, what are you doing, tell daddy.
Morning.
It's minus three degrees.
It's middle of December.
Middle of December.
Dirty water bucket, gallon buckets
six and a half liters or whatever it is for the sink.
Water that we fill it up with clean water,
which is a blue one there.
Clean water, dirty water.
Every morning we have to fill this up.
Over there is our poop bucket and we have to empty
from the house I have to march all the way
that way in the morning.
Where do you empty it?
Well, I empty it down the manhole
at the front of the house.
So it's minus three, middle of December,
we still shower outdoors.
There we go.
We have a water heater, pump,
car battery,
propane gas canister.
What I have to do, I have to lift up this.
I have to take out this black bucket,
I have to carry this black bucket.
It's clean now, thank God, to the front of the house
and empty it in the manhole.
I have to come back, I have to put some water in it.
I have to put one of these tablets in it,
which makes it less smelly, but it's very, very chemical.
And I put it back in here.
That is our toilet.
How's that?
That's how it is.
Look at you go.
Those are great moves, buddy.
Awesome moves.
Keep going, Theo.
Theo, you okay?, you keep going.
Well done, Theo.
Max, just climb up and then go down
the other stairs.
Maxie, they're all steps.
So the first part of the day that I will know about
in a life with Harrison is my alarm, my phone going off
with Harrison phoning me to say, he's awake.
When he wakes up and needs help,
he phones me and I go and see him.
Help him sit up, help him swing round
to the side of the bed, get him dressed,
put his socks on for him, put on everything else for him.
Then getting him from bed to chair
can't bear weight to anymore.
So I grab him under his armpits around his back
and manhandle him from the bed and get him comfortably
into his chair.
And then from there, it's now what does he need next?
He needs help with most things.
"It's like, I need a glass of water.
"Can you pick that up off the floor?
"Can you find that controller?
"Can you plump up this cushion?"
It's a full on job.
So depending on where he is. If he's in his chair, then yes
he'll take himself to the toilet to do a wee.
It's a number two, then that's the case,
picking him up, getting his trousers down and his pants down
getting him on the toilet.
He can't wipe himself anymore.
So you do it like you would for yourself.
He hates it, but I put a peg on my nose.
I have to put a peg on there because it's just, yeah peugh.
Yeah, ripe.
The bathrooms right here.
So you've kind of got an en-suite bathroom, which is here.
He's very excited about this toilet,
I'm gonna talk about that in a second.
Theo loves this 'cause it basically cleans his bum.
So essentially you've got a jet there
and then you've got a dryer there.
And because Theo has trouble wiping his bottom,
he could sit on here like he's in Japan
and it cleans his bum for him.
This is like a revelation for Theo.
What is it?
Hey, same old place in the car.
Okay, do you want me to go in.
I don't know if I can carry you.
I think I'm gonna put you in the buggy.
But it's got a break.
Where do you wanna go now?
So, where are we going to now?
Their lives are going to be something different
because of the condition.
Theo is probably right now, he's maybe about six months
behind his peers.
Developmentally often Duchenne boys just have a habit
of catching up.
Oscar is a couple of years behind.
At that point, it's even more challenging for me
'cause I suppose I'm fighting
against my childhood programming,
which is kind of strive, strive, strive.
I have to kind of fight against that instinct
and just let them be.
Oscar right now, he has a homework book.
His peers do some homework,
he has absolutely no interest in that.
And the view I take is we just don't do homework,
we just don't do it.
I think with Theo, he's a lot more kind of compliant
and willing.
His character is such that he likes to please
whereas Oscar likes to piss off.
Oscar likes to provoke.
Careful buddy.
Oscar was only nine months old when he was diagnosed.
You always look at the everyday
what other families are doing.
Other kids at the weekends, they play football,
they play rugby.
They go climbing on the walls or they just go for a walk
up and down Box Hill.
For us, it's impossible, they have to be carried down
the Box Hill.
They can slowly walk up with lots of stops,
but we can't do it on our own.
The kids, they spend less time with their peers
from their class because of that,
because they don't join the same afterschool clubs
which is mostly sport.
But we found another ways which are still evolving,
hanging out more with other Duchenne families
or we moved into really nice area.
And we have really nice neighbors that understand,
that even ask us if we need a hand.
And it's really important to have that kind of support.
It used to be a tiny branch that used to
look at that and I can turn around
I need help to get down.
Get down from here.
You wanna get down, down.
Yeah.
There you go, I got you.
There you go.
My childhood has been really physical,
my dad being athletic trainer.
So there was always this push.
If I was like that to my sons, it would be really harsh
on them, especially because of their condition
as they can't.
I can't do it.
If you've two kids with Duchenne, being a pushy parent
makes absolutely no sense
because your kids might not be with you for very long.
So it changes all of that in a fairly big way.
Yeah
The main reason that people die with Duchenne
is because they get a cough or cold
and then it becomes a chest infection.
Then obviously that on top of the existing
respiratory failure can end up overwhelming the body
and people die.
It's a very present fear and danger
that that's gonna happen.
So if anyone's around me with a cold,
then I try to tell people not to come near me.
And that can be difficult if you've got a PA
who's sick and you got no one to cover.
But I constantly got that fear that I'm gonna get that cold
and that that's gonna be what finishes me off.
People have been perfectly healthy
and then a week later they're dead.
That's kind of very real and very worrying.
They're taking out your chair, mate.
What are we doing, mate?
You guys, you do this for me.
You know how to do that, so press that one there.
There we go.
During the years working for the hospice,
I can see deterioration of the body.
Sometimes children can come and they can play football
which another two, three years they come
and they are fully dependent on the wheelchair
or they can play X-Box for example, which next year or two
the function of the fingers might be not that good
and they need special equipment.
Yep, right this way.
Yup.
Theo is seven now.
He's starting to understand a little bit more
because he's getting a bit weaker.
Do you have any advice for Theo,
what he's gonna go through in the next six years
as his body gets weaker?
Probably he'll start finding things harder,
like stuff that you normally used to be able to do
would get harder.
Like being able to walk for longer
start being able to walk for a shorter time,
won't be as long.
Might get annoyed with some thing's
'cause it's getting a bit worse and then yeah,
just kind of find things you used to find easy
more difficult.
And he's gonna get frustrated.
Yeah.
You were born with weak muscles, okay.
And you mustn't blamed yourself for it.
But I didn't want to be like that.
You didn't want to be born by that.
No.
Well, I know buddy, but it's...
Oh, buddy, I'm sorry.
Listen to me, okay.
It's all right, okay.
It's all right.
People are born in different ways, okay.
And you've just been born with poorly muscles
but that's okay.
But I didn't want to, because I want...
Daddy, I want to play football and stuff, Daddy.
If I can tackle the ball.
But you know what, if you can't play football and stuff,
you can play other games.
You can play piano.
I don't want those games.
Daddy, I wanna play footballs with my friends.
You want to.
Yes.
You know we're trying, you know what,
you might be able to play for yourself.
You know what, you know there are games you can play
in wheelchairs.
You know that, there are games you can do in wheelchairs.
No, I don't wanna play football in a wheelchair.
I hate playing that.
But why by walking daddy, I like playing football.
You want to be able to walk.
Yeah.
The one thing that I've worked on is acceptance.
You know, sometimes there are no answers
and solutions to things.
Fundamentally life can be quite cruel
and life can not make much sense, but that's okay.
Probably what I used to do, I had the capacity
to kind of wallow in hopelessness.
I sit with it now because it's a temporary feeling
which passes like everything else, it passes.
Nick, he fully believes there will be a cure
because otherwise he won't be able to do what he's doing.
Do I believe if there is a cure?
I like to believe that, but I try not to
think about the boys being down.
But then when they are down when they are struggling,
it hits me.
Would it hit me less
if I was thinking more about the future,
I don't know, but I would be less with them
if I was more in the future,
because I do spend more time with them than Nick.
And I think that's why he's able to think far ahead
more than me.
I would probably at the moment, concentrate
on helping with the quality of life
instead of waiting for medicine.
If there was a treatment to help it
get to where I could start walking again
it would be really nice.
Would be good.
I'm not sure if I believe that will ever be a cure
in the lifetime I'm most concerned about this generation,
but I do believe there'll be treated cure.
Now it's like a insulin for diabetics.
It's chronically manageable.
Lifespan is basically the same.
You can live a normal life, that I believe we'll have.
Is it is 95% boys.
99% boys.
It's 99% boys, 1% girls.
Does ice cream make the muscles get better, daddy?
Does ice cream make muscles get better?
It maybe could do.
I think that we're probably gonna need a few things
other than ice cream.
I think both of us from the start wanted to not shield them
from the reality of the condition.
The condition is 100% fatal.
Nobody survives Duschene.
Well alongside that, things are changing.
There are treatments on the horizon.
So is that reality at the moment fixed?
Duchenne sufferers, they die between kind of 12 and 35.
Discussing that reality is very hard
because it's not a fixed reality.
There are seemingly 30 fit Duchenne boys of 12, 13
doing quite well who die.
And they die because the disease affects whole body.
Their muscles might be okay, but their heart isn't.
They have a heart attack and they die or their lungs go.
It's a strange thing because of course we're all gonna die
at some stage.
And it just so happens that in their case
because they have a life limiting disease,
they can have far shorter lives than I'm gonna have
or Clara's gonna have, and the rest of us can have.
How long have you been in your wheelchair, Harrison?
About a year and a half, I think.
In a powered wheelchair.
Yeah, powered wheelchair.
Well, I suppose you started using a manual wheelchair
when you were maybe five and a half?
for longer distances.
Like three, four years, yeah.
If we can't adjust it that much,
the last resort is getting a new chair,
an adult one.
Ooh, that's pricey.
I know, but it's not that expensive
because the only thing you have to pay for is the extra bits
you get on it, which is like the rise part and that.
Those aren't cheap though, are they?
No.
It gets expensive.
This is really wide, this is this insanely wide.
The reason why it's so wide is because when in the future
they have electric wheelchairs, they're pretty massive.
So we'll have two electric wheelchairs in here.
I like it when you wheel a wheelchair.
I think far too much focus is put on the wheelchair
and the ability to walk.
Don't project your own negative feelings
about disability or wheelchairs onto this situation.
Because that actually comes from an innate perception
about disabled people that is quite negative.
And it's reinforced by society and stereotypes,
so that the wheelchair becomes something so tragic,
but actually as a person with Duschene,
once you get that wheelchair suddenly have so much freedom
and independence.
For years, you can't keep up with your peers
and you need help to get around.
You can't just go wherever you want whenever you want.
Once you get the electric wheelchair,
you can just drive off however you want.
You could just get around and it's just so liberating.
When do you think we'll move in there?
Easter, I think.
Easter, you think.
This is quite cold and cozy little cabin, isn't it?
Yeah.
When the boys were diagnosed, I locked myself
in a art studio and I created a few pieces
which I was able to exhibit.
It really helped me to picture the moment in time.
I need space and I had space to just be who I am,
which I kind of lost.
And art helps me to be on top of who I am.
What we do, we put that on there.
Oh, where does that go to.
And then we look through that machine
and that tells us that it's exactly level,
it's the right height.
I want to see more.
What's it called again that feeling.
Sinking feeling.
The sinking feeling.
Yeah, okay.
Pins and needles.
Pins and needles, okay.
Daddy, when I was playing on my camera,
my foot feel heavy, daddy.
What that is buddy, that's the muscles,
'cause the muscles aren't growing properly.
And also a shooting star, I feel the same, daddy.
At the hospice yeah?.
Yeah.
Okay.
And I was brave and I didn't tell anyone, daddy.
You're brave, you didn't tell anybody.
I love when you do that.
But you know sometimes you need to tell people
when you're in pain, because we all want
to help you, you see.
We don't want you to be in pain.
That's the thing.
This is really spinning class.
I massively struggled.
I've been suicidal.
I felt awful, and I thought I'll be...
You thought, okay you've got a house you move in
and everyone so you find out.
And I actually, I wasn't, I didn't know why it's really hard
waiting for it to finish.
No like any building work, but when it's finished,
we're ready for the worst.
The builders were asking us if we want to put hoists up
and we're like, no, we don't need them yet,
we don't want them to hang over our heads.
So I was seeing therapists and I think the biggest help
for me is yoga.
I'm a big yoga fan and with meditation,
that's the way I get through the day.
If it wasn't for yoga, I don't know where I would be now.
I think every one of us thinks,
well they might be better off without me.
I know it's awful.
And it comes only at the deepest darkest hour, but it comes.
It only happened to me twice.
And I was very lucky I had Theodore in my arms
and he was awake and he was holding me tight,
wiping my tears away.
Okay, does that makes sense.
Yeah?
Okay, let's go again.
He hangs out with, Older boys with Duchenne
who are in wheelchairs and understands
and accepts that he will be far more in a wheelchair soon.
And could be in a wheelchair full-time like Harrison
by the age of 12 or 13.
Part of him is quite accepting of that reality
'cause he was born with Duschene, this is all he knows
and he's always had weak muscles.
If you ask him and you say, how is that?
He'll say, I'm okay with that, dad, I'm cool.
It is tricky.
It's gonna be very difficult raising two young boys
with Duchenne.
And I don't think there's any getting around that.
I think it's gonna test you and you need to be strong enough
to weather the storm.
From my conversations with them in terms of them
understanding what's possible
when you're living with Duschene,
I think they've really got that
in a way that other people haven't sometimes.
And I think you can still have a good life,
even if you have Duchenne.
Just recognizing that I think is really important
and not getting hung up on, we have to cure this thing,
but making life as positive as possible.
I think the other piece of advice I would give
is just not to be too soft on the boys,
say I've got where I've got
because I've been pushed to do so.
I think I've been encouraged to aim my expectations
quite high.
That has really paid off and that's gonna really that
to where I am now.
Sometimes when I was younger, I might have been tempted
to give up and because I have parents
who either didn't let me off the hook and actually pushed me
to succeed, I think that really helped shape my characters.
So, you don't need to try and shield your boys
from every hardship and every difficulty,
every negative experience, because that shapes who you are,
as much as the positive things.
And you've just gotta let the boys kinda experience life
as it is.
I think Duschene is really hard on the relationship.
And when I know there are stats out there about it,
say 90% of families with a kid with Duschene will divorce.
There was lots of stuff for us that led to our separation,
but Duschene didn't help, absolutely didn't help.
It's a hell of a weight when someone tells you
you might lose your child
that you've brought into the world through love
and they're gonna be taken away from you.
That's a challenging thing to bear.
And I think for a period of time,
it kind of joins you together more
if you're that kind of person or that kind of couple,
you kind of amalgamate into one driving force,
moving forward.
I think for us, I probably threw myself
at everything else I'm gonna do iron man,
so that's 20 hours, 25 hours away riding bikes
and swimming and running.
I started off doing two jobs.
I was doing my own job and then I was doing charity
every night.
That strain on top of everything else.
I think it's just an absolute bitch, Duschene.
I think it's just horrid.
It's horrid, it breaks families up,
families lose their brothers, sisters, mothers.
These all goes all wrong and we lose sons
and yeah, it's bloody challenging.
Duschene did kinda lead to maybe them splitting up,
I think 'cause I think it's just difficult for them
and I guess sad thing really.
It's kinda sad.
This one is quite tricky condition,
how family is dealing emotionally with Duschene
and how offload they are with meetings, with connections
with hospitals, professionals.
I think this is really big impact on the family,
on siblings, not only on the child affected.
So, last night when you were putting on these things
on your legs, can you tell me what they were
and why you have to do that?
It was splints.
Because they make muscles better.
It means I can't walk very well
because I'm not that stronger enough.
Why do you need help?
Because I'm disabled.
Why'd you think they need the crane?
What's Ronnie doing with the crane?
He can put the roof on.
Living in a cabin was really massive pressure
on the relationship of me and Nick.
The kids, they just rolled with it, they're kids,
but we still kind of have scars from that,
which we we're working on.
I think the Duchenne has affected the marriage.
Clara and I, we've been through a lot.
We are still going through a lot.
To pardon the cliche, there's that sense that Clara and I
both have as what doesn't break you
kind of makes you stronger.
Hard thing, I think, in terms of the marriages,
it's expectations.
Both of us are probably sat there on our own
in our quiet moments and kind of gone,
is this what we signed up for,
to have two really seriously ill kids.
I feel really blessed with Clara
because she has this kind of incredible inner strength
that she can endure hardship.
And I think it's the disconnection
between me and Nick as well.
We're doing well, but we can do much better.
There's lots of, I would say there's lots of respect
between us, which keeps going.
So like it says this, I love Clara
and my intention is to spend the rest of my life with her
'cause I really love her.
But I can't say if we will spend the rest of life together.
I don't know.
I don't know what the future holds.
I don't know.
♪ Happy birthday to you ♪
You might not be walking in three or four years time.
You'll be on the clinical trial
and that's hopefully gonna help.
And you're gonna do your physio, more of the physio
and you're gonna wear your space boots
and that's gonna help as well.
Because Harrison started using his chair a lot more
when he was about 10, 10 or 11.
And he's 11 now and he's in a wheelchair all the time.
But if we start wearing the space boots
will they get better daddy?.
Space boots will help a lot, they'll help a lot.
So maybe we need to start wearing them.
I think we should start wearing space boots,
I think that's a really, really good idea.
I think we should definitely start wearing space boots more.
So basically space boots, buddy, and horse riding.
So you know yesterday, you didn't want to go horse riding,
and you got really angry and cross and screamed at dad.
Horse riding is really good
'Cause you know, when you're horse riding,
you use 100 muscles.
So horse riding, space boots, physio with Becky,
stretching the muscles every day with mommy and daddy.
But I do, do it every day.
When we get the new house we'll do more stretches.
But I do stretches everyday.
And the plan is...
But it's hard doing it everyday.
I know.
And the plan is to try and keep you as strong
for as long as possible and try and keep you
walking for as long as possible
before you have to go in a wheelchair.
That's the plan, okay.
All right, not too close.
Was the horse riding fun?
Yeah.
Yeah?
Turn it off.
Dragon.
Where's the dragon.
This way, this way.
Dragon, dragon, dragon.
Oh, are you okay?
Almost a few months after the local pediatrician
diagnosed Theo and Oscar, she says,
"Have you thought of having another child?"
And Clara and I like, "You've got to be joking,"
This is crazy.
When we were kind of getting our heads around
what we had to deal with Theo and Oscar and their condition.
But increasingly we kept on thinking
about what She'd said and it started
to really make more sense in terms of trying
to bring a normality to their lives.
The decision wasn't easy.
We had loads of doubts.
Is it fair for the boys have able sibling
or the sibling to have two disabled boys
who most likely will die when he's young.
You can become almost quite obsessed with a condition
to the point that it sort of becomes your world.
And the thing is, is life is way bigger than that.
With Luca, we really wanted for them to have a brother.
It was a really difficult question
because you're kind of thinking,
well, what does this actually mean?
What would this mean for Luca as a 10 year-old
if he's watching his brothers deteriorate.
We thought of all those things.
And then we kind of thought, well, actually
we can't approach it with fear.
We're kind of fearful of how Luca might feel.
And it got to a point where it just felt right to try.
Our families were in shock.
And then once we started a process,
they were of course, very encouraging.
You have people that you just bump into in town
every few months.
And when they see me pregnant, they were in a shock.
When they saw Luca as a baby, they were like,
"Is he healthy?
"You had another boy, is he disabled?
"Is he healthy?"
I said to them, yes.
It's almost like people can't get their head around it.
But then they don't know the whole story.
It took a long time, lots of drugs, lots of injections.
The process that we went through
'cause it was kind of IVF. It was IVF plus.
It's a thing called PGD,
which has preimplantation genetic diagnosis.
So what they do is as at five days old,
they take the fertilized egg and they look at it
and they can tell you whether or not it carries
the disease, which Theo and Oscar have.
They were the first two embryos.
They called me and said they're both with Duschene,
I just couldn't stop crying.
I said, can I go through it again?
Should we try another round?
We were not sure because we were emotionally wreck.
And then we have Theodore and Oscar
who needed our full attention.
We were open that we trying to have another baby.
And they were so excited.
When I spoke first with Clara and Nick,
they did inform me Luca was the child
Which they hope he will be a cure for Theodore and Oscar.
I had some background with IV and cell transfer
from my previous job as well.
And I fully understand parents and from where they came from
to make that decision.
And obviously parents want the best for all of the children.
And if they've got opportunity for future to try to support
or to try to cure Oscar and Theodore,
obviously this like medicine.
Other than wanting the boys to have a brother
and for us as a family to have a non-affected child,
we wanted to take his stem cells at birth
because we could then use those in future
to treat Theo and Oscar.
And stem cell therapy, there's a lot of promise there,
like all medical research who knows,
but there's a lot of promise there.
During the birth, we had to notify the hospital
obviously that somebody was gonna come in from the outside
and take stem cells.
And we had a really lovely midwife.
The shift changed 'cause Clara was in labor
for some time and a new midwife came on.
She suddenly announced that the lady coming to collect
stem cells couldn't come in the room
at which point I flipped out was very, very angry
and said something which kind of came across
to her as the only reason why we're having this child
is because we want the stem cells for our two sick children.
I remember the look she gave me.
You think to yourself, well actually I'm tired
of self-justification.
And there's no point such justification anyway
because people have opinions and they either sympathize
and understand what you do or they don't.
And for me to articulate what I meant by it
was the we would not have had Luca
if we didn't have two boys with Duchenne.
Fundamentally we had Luca because of Theo and Oscar.
Would we have had Luca if they didn't have Duschene?
No we wouldn't.
There's two big reasons which Clara I kept
on going back to, it was one,
we need to introduce another dynamic to this family
that will help Theo and Oscar.
And secondly, we need to offer them the serious prospect
of a treatment or cure, which Luca's stem cells
can provide.
This woman was looking at me in particular
because Clara was kinda out of it.
Because obviously she was in pain in giving birth
and basically kind of thinking so on that basis,
you're not gonna love your third son.
Of course it's not that at all.
I mean I love Luca as much as I love Theo and Oscar
and I love them all equally.
That's the honest response to that question.
That's the reality is, that's why we had Luca.
And just because that was a reason we had him,
it doesn't mean we love him any less.
It's just, that was the reason that we had Luca,
just, that was it.
Ooh, there's a bone, a bone.
You have bones, this is your funny bone,
ribs are your bones.
Even in the age of two, he does more than Oscar
at the age of five or Theo at age of seven.
The speech to the movement, everything.
It's lovely, isn't it.
Look at that tree there.
That tree is all on it's own.
Having a sibling without the condition
has been quite powerful because I've seen
what the normal experience is,
to say normal in inverted commas.
Seeing my brother grow up and seeing what opportunities
he had and what he was achieving,
I wanted to be able to achieve everything
he was able to achieve.
So I was quite determined and competitive
to actually be able to achieve.
Then I got into university, I wanted to do that.
That's what my brother did.
And the fact that Nick and Clara have had Luca
is like really important.
Having that experience of having a non-disabled brother
has really made me more aware of a different perspective.
And I think it's made it easier for me
to relate to non-disabled people and see that perspective,
but also to see what life should be like.
What if society has been designed to include you,
what that allows you to do, and actually seeing from that
what's the difference as a disabled person.
I think that drives you to try and change things
for the better.
It is amazingly difficult to look after three kids
24/7, particularly if two of them are also disabled.
The demands are kind of massive, just massive.
And I knew that Clara would be a great mom,
but she's a pretty extraordinary mother to those boys.
Theodore.
Being able to provide quality respite for Theodore, Oscar.
I was really privileged.
I really admire all family because they are struggling
with day by day tasks, going to see family
how Clara cope with manage three boys
in the same time with no support is really amazing.
And seeing Nick, how involved he is
with Duchenne's programs, with charities
with his charity runs and cycling.
I know how long they were struggling
living in the back garden.
They never, never says anything bad about the life
and about the need to live in the back garden.
He likes them, look.
The big idea around this was, which I suppose
is a question for all of us is about how do we enrich
our lives and particularly how to enrich someone's life
who has a life limiting disease or condition.
I'd never really been a great appreciator of architecture.
But once this project started, you realize
actually the value and importance of architecture.
If you can create the right environment,
you can actually enable and nurture the hearts and spirits
as much as possible in spite of their conditions.
Thank you.
It's really beautiful to see how the seven and a half
year old Theodore goes on the ground with the two old
and just be silly.
That's the beauty of having Luca.
He's keeping them being children in this world
where everything is going really fast.
He's keeping them playful.
I think Luca has brought just completely different energy
to the family.
That's not to say that because of Theo and Oscar's Duschene,
that energy was kind of either worse or more difficult
or whatever, but he opened our eyes again.
And certainly for Theo and Oscar in a big way.
So I mean, they kind of adore him.
I think their way of dealing with that Luca is more able
and then also that they are Theodore,
especially now is getting weaker.
Theodore wants more of mommy.
They would strangle me with love literally.
When I read them stories before bedtime,
I have Oscar, Luca and Theodore.
Theodore feels he's too far from me.
So when Luca falls asleep, Theodore gets cuddles.
They're sensing that he's different
and I really hope that in future they both understand
why we chose to have Luca, which I'm sure they will do.
Oscar, can you do a fart sound?
I can't get a fish.
Oscar at the age of five now is still in a state
of blissful ignorance most of the time about his Duchenne.
He's living in the present moment.
He's not thinking about what it is doing to him
and will do to him.
Theo is definitely more aware, certainly finds a hard talk
about probably because he is more aware.
So when I push him on and I ask him that really
how he's feeling, there's an acknowledgement
that he's getting weaker.
That's only come in the last few months, I think.
So I think that he's beginning to see that his peers
at school, his friends are kind of going like that
and he's not evolving and developing in a way that they are.
I think the hardest part of this job
is seeing children dying.
We try to support family and children in that time.
However, is huge impact on the carers
and nurses and the whole staff member.
I think it's lots of emotions which I am there
to support family that time,
but obviously it's a huge impact on us.
We are supported by our counseling team,
we've got supervision, we've got debrief meetings.
But working with families over a years,
you build up connection and slightly,
they become part of your family.
That was spicy ketchup.
Oh, I gotta be like pirate now.
Pirate patch, yep.
Now the two of your eyes are gone.
Yeah, but now I need a carer now.
I'm blind.
I got it.
The policy Clara and I have is that we don't want
to hide death from them because death is death
and it's a part of life,
and it's what makes life fairly extraordinary,
the fact that we have to live in and we have to die.
But I think we need to let them discover
that game of life for themselves.
But the rule we have is that they ask us,
we will be honest about it.
So certainly we are honest about the prognosis for Duchenne
which is, if they ask when they might be
in a wheelchair full time, we will tell them that most kids
with Duschene would be in wheelchair full-time
by the age of 12.
If they ask us when they'll start having
difficulty breathing, most Duchenne suffers,
start having trouble breathing at 17 years old,
might need a tracheotomy, might need a ventilator.
So we'll answer those questions if they ask us.
They have constantly one to one with them.
So even if they making friends, there's always supervision.
We do have a trampoline and Theodore will tell Oscar,
Oscar, don't bounce, you're breaking your muscles.
So Theodore knows, he's got this emotional growth.
So even he doesn't like fully understand, he does.
They kind of understand their own way.
Often, you look at Theo, and you kind of think
he's definitely been here before
there's a kind of an innate wisdom to Theo
and emotionally he's very there.
He can be very shy at times, and he's definitely
a bit of an intellectual as well in his own way.
Oscar, he's got an extraordinary imagination.
He's very very musical.
He's got a real sense of rhythm,
which Theo possesses none of at all.
Theo's kind of like me, just absolutely no rhythm at all.
I'd probably worry more about Oscar's future
than I do Theodore.
Probably 'cause I think he is more developmentally effected
but also I just can't quite see how he's going to be capable
of any kind of independent living at this moment in time.
And will certainly need to go to a special school
that essentially will give him the time to develop
as many kinds of independent living skills as he can.
Fire.
How do they shoot cannon balls?
Oh, there's a hole with garbage in it.
You see people, they look at your life
and they make a kind of instant snap judgment
that, Oh, that must be terrible,
I don't know how you cope with that.
A lot of that attitude comes from people feeling
that if that happened to me, I would not know
how to go on because it's just so terrible.
And I think that is such a one sided way
of seeing disability.
I have so many positive things going on in my life.
I'm working, I'm phoning people, I've got pets
and the family life I'm married.
I've got such a rich life of which my limitations
or my disability is only one part.
I feel very positive about my life
and I wish people would just kind of not look
at my life and just write it off as tragic,
but actually see everything that I'm involved with
and actually say, no, that's actually quite a good life.
There's an environment there now,
which is going to really enable them in every possible way.
We hope anyway, obviously you can't control that,
but so be it, the environment is there for them
to really thrive in spite of their condition
as much as they can.
The house is absolutely amazing.
But it's a physical manifestation of the boys' condition.
We only doing this because of there needs
being more and more unable to move around and do things.
I think I'm defined by Duchenne now.
I said, I wouldn't let it define me,
but I think now as I look back on the last seven
or eight years, I've now defined by it.
Everything that I've achieved in a challenge setting
has been framed around Duchenne and beating it.
Hey, I wouldn't change it.
That's the weird thing.
I could sound like I'm being unhappy about it
or it's hard, but then I've also had the best eight years
probably of my life because it's meant something,
it's really meant something.
This is the bizarre thing about it is that actually
the default position is pity.
And that's partly, what's quite hard about it
because either you feel that you should be sad all the time
because you have children with a fatal genetic illness
or you must not entitled to happiness,
or it does just take the joy out of life.
But actually it's made me cherish them
and funnily enough, probably made me more able
to be in the present moment then without the condition,
because there's a greater imperative and urgency
to really be with your children if you know
they're not gonna be with you for so long.
You suddenly realize that basically
you were kind of living rather blindly through life
and you suddenly wake up and go, wow.
There were so many wow moments with Theo and Oscar,
They're really gorgeous little boys,
bring me a lot of happiness.
And I'm sure those moments are far more wow
than they would be because of the Duchenne.
That's the flip side.
It's a weird flip side, but it's very true flip side.
There is families that we met in the hospice, for example
that I feel very privileged to meet,
but if it wasn't for Duchenne, I would never met them.
There's carers, theere's people in charities
that we met, the greatness of people wanting to help
and wanting to make a difference in this world for people,
for children that need help.
Just to be part of that and meet these people,
it's amazing, or even the building company
that helped us to build the house.
If it wasn't for Duschene, we wouldn't go through
this journey and for what it's worth,
Duchenne brought us together as a family.
If I can say that, can I even say that.
In terms of Theo and Oscar,
kind of what message I would give them.
I think it's really about not worrying
about being different.
Recognizing that being different
can be a superpower sometimes.
There's such value in being different
that I think you should embrace it,
embrace whatever you need to make life easier.
So don't worry about using a wheelchair or other equipment
because that's there to help you
and that makes your life easier.
I think it can be hard seeing all the things
that you can't do when you friends are doing that,
but having Duchenne can make you stronger as a person,
it can make you more able to cope with difficult things.
It can teach you how to adapt to change and how to manage.
And that can give you strength to other people
won't necessarily have.
And I think if you can deal with Duchenne,
then you can help other people deal with other things
that they have to deal with.
So it can make you quite strong, I think.
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