All language subtitles for Ellie.Simmonds.A.World.Without.Dwarfism.2022.1080p.HDTV.H264-DARKFLiX

This program me contains some scenes
which some viewers may find upsetting

I call this like my second home.

For me, it's just
the most beautiful place.

I spent four, five years training
at this pool every single day —

morning, evening.

As an eight, nine-year-old,

I said to my parents,
"How do you go to the Paralympics?

"How do you get that gold medal?"

And Mum was like,
"You just have to be better,

"you have to just work really hard,

"you have to be good at what you
do." And I think as a kid,

that was my trigger point.

I was like, "I would love
to go to a Paralympics.

"That's my dream.
I want to get a gold medal."

Oh, my word, the crowd have just lit
up behind us like a jet engine.

This is Ellie Simmonds taking
her on,

that wonderful metronomic stroke
that she's got.

She did it four years ago
in Beijing,

is she going to do it
in London 2012?

A great, great gold
for Ellie Simmonds!

A new world record time of 5:19.17!

Being born with dwarfism has made me
the person I am today.

I've travel led the world
representing Great Britain

and won five Paralympic
gold medals.

But a new drug, vosoritide,
is in clinical trials.

It treats achondroplasia,
the most common form of dwarfism,

which is what I was born with.

It's just one of the new wave
of drugs makers claim

can reduce some of the medical
complications

associated with dwarfism if given

to children while they are
still developing.

Do you think it's cool being small?

Yeah. We're unique, we're not just
the same as everyone else.

I really just wanted to take it
and be able to experience

the things that I always wanted
to experience.

But these drugs are also designed
to make children

with dwarfism to grow taller.

Do you want to be taller?

Yeah, because I'm eight and they say
I look about six or seven.

I'm worried it could be
the end of dwarfism altogether.

The assumption is that dwarfism is

a problem that needs
to be fixed.

I want to talk about
the entire goal of trying

to normalise how people look.

You know, it wasn't
the body that I felt like

I was supposed to be born into.

I want to meet the families
involved in the trial.

I remember wondering if he would...

If he would find love. In life.
Is that one of the things

that you were worried about?
I worried about that.

To find out why parents
want to give

this experimental drug
to their children.

If they gave you
an option about this drug,

do you think you would
have thought about it?

And ask, if cutting edge medicine
can stop disability in its tracks,

should we always use it?

My stance on this drug,
and I'm really excited

to figure out more about it,
but I'm pretty much against it.

What is it about?

Is it changing who we are?
Is it changing being a dwarf?

I'm not a fan of that.

A nine-year-old boy from
south London with dwarfism

is taking a new drug which could
help boost growth

in people with the condition.

The new drug vosoritide is now
in the final stages

of trials in the UK.

She was terrified that her child
had achondroplasia.

My job was to try and give her
control back over

what was a very disempowering
situation.

A decision could be taken
as soon as next year

about whether to roll out
the drug on the NHS.

But there's controversy over

whether normalising dwarf bodies
is ethical. Yes.

I'm concerned that it's
the latest way in which

the average-height world is trying
to change people like me,

rather than accepting us
for who we are.

If we decide that dwarfism isn't
valuable enough in humanity

to keep it around
and we get rid of it,

then we'll have to ask the question,

which one of our differences
will be next?

Oh, it's so cold.

These are my pedals.

So mine just has, like,
clip-on extensions.

So, as you can see,
my legs are dangling,

so normally there would be
a raised platform

so I could rest my legs,

as well as put my feet on
the pedals.

And a pillow on the back,

just to up me a bit more
so I can drive.

That's pretty much all I need.

I'm happy. I've had a very positive
outlook of dwarfism.

There's never really been
a time in my life

where I've been like,
"Oh, I want to be tall,

I want to be different."

It's given me some of
the most amazing things.

Like representing my country,
going to the Paralympics,

and the friendship, the people that
I've got to meet along the way.

But it definitely doesn't define
who I am. I'm me. I'm Ellie.

I've had such a positive life
experience, I find it hard

to imagine giving your child
an experimental drug

to make them taller.

So, I'm keen to meet one
of the families on the trial.

Hello! Hi, guys! Come in. Hello.

Hello, good to see you.

Hello. Nice to see you, too.

Ten—year—old Talia has
achondroplasia like me.

She joined the vosoritide trial
when she was six.

Since then, Talia's mum
Rocana has been giving her

one injection every day.

This is where we keep all of
the vials for all the injections.

So we've got a shelf in the fridge,

and they are kept in these boxes

and they've got a tag on them
that show us that they are at

the right temperature,
so they're viable to use.

Oh. So, there's ten vials in here.

So is that... That's the actual
stuff at the bottom?

That's the drug, yeah.
Oh, wow. It's like dust.

Yeah, that's the vosoritide.
Oh, wow.

So as Talia's weight goes up,

the amount that's injected goes up.

So, I'll sit down, Talia stands up.

So, it's that one.
Oh, it's that one. Yeah, yeah.

OK, so we sanitise the area.

Sanitise all of it.

Three, two, one. You've got it.

Go? Yeah?

500?-.

Three, two, one, boosh.

Big, deep breaths, yeah?

Three, two, one, we're out.

Good girl.

That's over with, isn't it?
In two... So quick.

You're a good girl, brave.

Talia has grown six centimetres
in the last 12 months —

two centimetres more than
the average for a child

with dwarfism her age.

Do you get anything afterwards?

After you do your injection
every single day?

Yes, I used to get, like,
a little sweet.

Aw!

Now she gets a marble.

Oh? And what do you do
when the jar fills up?

I get like a little treat
or a surprise.

Oh, that's... Oh, so we're not
there yet, though?

I want to understand why it's
so important for Rocana

that Talia takes this drug.

Looking at the stats,
it's very likely that she would be

smaller than she is now.

Also, her spine is straighter,
from what we can see,

and her legs are less bowed.

So that is going to impact her
overall height as well.

But it, you know,
in addition to that,

it's things like her being able
to put her arms like this now,

whereas before, it was about here.

So, if she wants to throw a ball,
she can do that with more ease.

You know, she was talking about
being able to do that

in football last week.

She can run more easily now,

and before, she had quite bowed legs

so her legs would go out
to the side more.

So how do you feel about
keep taking the drug?

I'd rather do it but,
yeah, because it does help me.

And do you feel better
for being a bit taller?

Not being taller, it's just being
able to do more things.

Vosoritide only encourages growth
if children start taking it

before they are teenagers.

But it's believed
to be most effective

if given at an earlier age
to maximise its effect.

When Rocana decided to join
the trial four years ago,

she'd been looking
for medical solutions

to help Talia since she was a baby.

It was quite a frightening
time, actually.

Yeah. Because I'd never heard of
the word achondroplasia before.

And I have an average-height
family so, yeah,

so, I did a lot of research.

But, yeah, it was frightening.

Yeah, I can imagine.

The fear of the unknown,
I had, as well.

Was there any medical complications
when she was younger? Or even now?

Yeah, actually, one of the doctors
said she might never walk

and dealing with the sleep apnoea,
she her adenoids removed.

So, she had to have
an operation very young

and to see your child
in pain and so helpless is,

yeah, it's really hard.

And I think generally
the fear of the unknown,

not knowing how she might develop.
Yeah.

So how did you hear about the drug?

We were going into the hospital
for Talia to have

a check-up and they said,
"Oh, we know about a drug trial

"that may be happening
in the future."

I think it took three or four years

before we actually got to the stage
of being on the trial.

I was probably thinking more about

the impact it might have on
Talia emotionally, physically,

and all the other issues that could
potentially come out

of taking a drug every day.

And how was the decision made?

It was a really difficult
decision to make.

So, I spoke to Talia
about it at length,

again, did all the research, spoke
to as many doctors as I could,

spoke to friends, spoke to family.

Because everybody's thoughts on it
were really important to me.

Mm. Obviously, Talia was the most
important person in all of this,

but also Talia was young —
she was five or six at the time,

so her knowledge of what it might
entail was obviously

going to be limited,
but ultimately as a mum,

I wanted Talia to have the best
quality of life that she could.

It must be so hard for parents
to make such big decisions

on behalf of their kids when
they are still so young.

From the research that I'm doing,

it seems to be predominantly
average-height parents

that are having their
children take the drug.

Dwarfism can be caused by
a spontaneous gene mutation,

so it can happen to anybody.

80% of parents of children
with dwarfism are average height

and many don't have any lived
experience of dwarfism.

Is it curing the looks?
Is it curing the growth?

Is it curing the pain?

They're average height.

Like, how can they make that
decision for their children,

when they've not actually grown up
knowing what it's like

to be a person with dwarfism?

But at the moment, I don't have any
children, so it's a... Yeah.

But if you did have children,
what would you do?

I would ignore it.

If I had children
and I saw this drug,

I would just totally ignore it.

Just raise them up how
I got raised up.

I grew up with
average-height parents

and they always ensured
I was surrounded by other people

with dwarfism.

I did my first swimming
competition with

the Dwarf Sports Association
at the age of two.

It was set up by Penny,

who's been an important person
in my life ever since.

Come on, Lu.
Hope she didn't do a poo there.

I didn't notice.
ELLIE GIGGLES

So do you remember
when we first met?

Yeah, I think you were about
between one or two,

this determined little person.

Mum brought you to the games,

but all you wanted
to do was get in the swimming pool.

Yeah. You swam in a big
balloon-y type jacket thing

and you won.

You got onto the podium, you got
your medal and I lifted you off

and who'd have thought from
that day to this,

here you are, sat here with me.

You're still family. Yeah.
You know what I mean?

And suddenly you're my son's
partner, which is lovely.

I mean, I didn't know both you
and him were communicating.

And it wasn't until he let it out
the bag that I said,

"Oh, Ellie? Oh, great."
THEY LAUGH

Is that what you said?

"Oh, great." Oh, Lulu.

Oh, Lulu, come here.
Lulu, Lulu, leave the doggy alone.

What was it like for you
when you were growing up?

I was born into
an average-height family,

with average-height siblings.

And my mum was told that I was
going to be small,

and back in those clays,
you got on with it.

My mum never treated me
anything different

and maybe I'm one of the lucky ones,
but all through my life,

we haven't had issues
or problems. Yeah.

Yes, people will look.
Yes, people will stare.

Yes, people ask questions,

but that's all about learning,
isn't it?

Penny and her husband Arthur first
heard about vosoritide

before the company behind
the drug, BioMarin,

launched the drug UK trial.

It was all right!
SHE LAUGHS

We went to the first ever meeting
of BioMarin in Newcastle

a few years ago when it
first reared its head,

and the first thing they said,
this guy said,

"Well, this new drug that we've got,

"I want to tell you that it will
improve your quality of life,

"so that you can get married,
and you can have children,

"and you can live an ordinary life."

Well, steam was just coming
out of my ears.

So I put my hand up and I said,
"Excuse me, how dare you?

"I am married. I have been
for nearly 50 years.

"I've got three wonderful children.

"I've got two wonderful
grandchildren.

"How dare you say that I don't
have a quality of life?" Yeah.

And there was another lady there
with him and she was going..

In other words, you've done
it all wrong. Yeah.

It's upsetting that
even today there are

so many misconceptions about
dwarfism.

BioMarin has since said that
those alleged comments

do not align with
the company's position.

There are over 200 different
types of dwarfism.

My form of dwarfism —
achondroplasia —

is caused by genetic mutation
that leads to impaired bone growth.

This causes physical differences —
like short thighs and upper arms

and in more than 80% of people
with achondroplasia,

it also causes bowing of the legs
and curvature of the upper back.

For around 15% of children born
with dwarfism,

life-saving surgery is required

to ensure that the passageway
that connects the brain

to the spinal cord is wide enough.

The makers of vosoritide claim
it reduces the chances

of these complications,
but the majority of us

live without serious medical issues.

In the UK, the trial is being
conducted by NHS trusts,

but is funded by BioMarin.

Dr Mel it a Irving has been leading
the trial since it began in 2015.

She's due to update the Department
of Health on her progress in 2023.

I want to know, like,
what is this drug all about?

If you have achondroplasia, the
damaging change in the FGF R3 gene

really slows down bone growth.

The role of the drug is to release
the inhibitional bone growth,

so it inhibits FGF R3
and it tries to make

the bones grow more normally.

So how do you measure that
the drug's working?

So, the main thing that
we measure is growth

and that's because
your bones are growing.

And if your bones are growing,

that's because they are responding
to the drug.

When I was 11 years old,

I had a minor operation
to straighten my legs

and help with my swimming.

So, for me, I had an
operation in the past —

with the bowing of my legs
so I had the eight plates.

Does it help create a lesser chance
for the individuals

to have things like
bowing of the legs?

Other individuals with dwarfism,
there's a risk of ear problems,

back problems,
head problems and other impacts.

Yeah, so, achondroplasia does
impact every bone in the body

and it's our hope that this drug,
in the long run,

will improve the way the bones grow

so much that the need
for those surgeries

and operations will not be required.

But in addition to
the medical benefits,

my worry is that by changing bone
growth throughout the whole body,

the drug will effectively
stop dwarfism.

So there's a massive fear in
the dwarfism community,

and I think for me, as well,

that this drug is going
to eradicate us, in a sense.

The intention for trialling this
drug and developing this drug

is not to eradicate dwarfism.

Yes, dwarfism is an identity,

but I also see achondroplasia as
being linked with significant

medical problems as well,

and so one of the purposes
of trialling this drug is

to see if we can eradicate
those complications,

rather than eradicate dwarfism.

Although I had a surgery to correct
the bowing in my legs,

for me there is
an important difference.

Surgery didn't change how tall
I was, but this drug seems

so focused on making people like
me taller, I feel it sends

a message that there's something
wrong with being small.

It's not just vosoritide.

There's a whole new wave of drugs
designed to treat

the other forms of dwarfism, too.

I'd like to introduce you all
to Ellie. So, hello, Ellie. Hello.

THEY MURMUR GREETINGS
Hello.

So, I've just got a question here.

How do we show kindness in
our classroom?

Now I want a little bit
of partner talk time.

So how do we show kindness? We can
show kindness by tidying up...

Yeah, that's really nice.
..after people.

Oh, yeah, that's a good one,
isn't it?

Eight-year-old Jesse has a form
of dwarfism called

Russell Silver Syndrome.

Since he was five, he's been taking
a drug called Omnitrope,

a growth hormone to help with

some of the physical complications
of his condition.

It's already approved
for use on the NHS.

This used to be the cushion
for my dinner.

But, now, in the dinner hall,
my feet can reach the ground.

Is that because you're
growing quicker now?

Yeah, because of my injections
that I have.

Yeah. How are those?

They're fine, you get used to them.

Oh, do you? Does it hurt?
Is it painful?

Not once you've got used to it.

Do you have to do it every single
day, once a day? Yep.

Every day, once a day.

Is there ever a moment where you're
like, "I don't want to do this"?

Yeah, all the time. Is it?

Well, we just have to do it.

Is that so you could grow taller?

Yeah. Do you want to be taller?

Yeah. Do you? Why?

Because I'm eight
and I'm a bit small for my age

and they say I look about
six or seven.

But that's not bad, is it?

No. Do you know, when you're older,
you'll love looking young?

How old are you?

How old do you think I am?

Hmm. 30—something.

Do you? Yeah. Do you think I'm 30?

Why'd you think I'm 30?

Um, don't know.

Well, my mum looks like 40,
but then she's actually 34.

I'll have to see. And my dad's
36 and he looks like 60.

Hiya, J. How are you? Hi, Mum.

OK. Do you think I'm taller
or you're taller?

Let's have a see.

I'm probably,
probably a bit taller than him.

Yeah, yeah. Only just.
What about her? And me.

Oh! I think Ellie's taller.

Just a little.

THEY CHEER

Since Jesse started taking
growth hormone,

he has tripled his growth speed

and has grown an extra
17 centimetres.

This is what bedtime looks like.
Is it?

His lung capacity, which had been
affected by Russell Silver Syndrome,

has also improved.

But to see significant improvements
with this drug,

children must have daily injections
until they stop growing.

Is that the needle?

It doesn't look like what
I thought it would look like.

It looks more like a cool gadget.

You can either do this in your knee
or in your bum.

Well, in your thigh normally,
isn't it? Or in your bum.

Are you OK with me looking?

Yeah. I could just do this...

Parents like Jesse's are in
a difficult position.

If they don't inject them when
they're young,

they won't get the results.

But what if they grow up to wish
they'd never had the drug at all?

So, Jesse at school today was

telling me that actually sometimes,
like, injections,

they're not nice at all,
are they, really?

Does that, like, worry you
or do you feel anything when

you know that he's not enjoying
getting the injections?

He has said a few times,

"I really like being small.
I'm happy being small."

He will sort of say that and hope
that he will get out of it and...

But I think, at the moment,
what he can't compute

is having this medicine helps him
to be able to live his life

in a full way that he wouldn't
otherwise have.

Do you think if he said tomorrow,

"I don't want to do this any more."
How would you feel?

I think that he's eight,

and I think that he doesn't
understand the consequences

of a decision like that.

And so it wouldn't...

It wouldn't make me
stop straight away, but I think,

would I choose for him not to have
to go through it? Of course.

And it's not something
that we take lightly.

I've got the strongest head!

Parents are facing tough choices
that will forever change

their children's future — whether
they choose the drug or not.

And at the same time,
they are only ever a click away from

an upsetting story or social media
post about dwarfism or disability.

"Nine times out of ten,
when I go into public,

"I can take the abuse, laughter,
staring, etc."

HE SIGHS

Yeah, it's... Are you
OK reading these out, Will?

Yeah. You know, when I wrote this,
I was really angry.

Will Perry was one of my team-mates
at the Tokyo Paralympics.

I was really upset to read his posts
about being targeted for abuse

because of his dwarfism.

Do you think that parents
are fearful because they think,

"Oh, this is the worst thing in
the world, this is...

"They're going to get bullied"?

I've had genuinely hundreds of
messages from parents

around the world
and they're very concerned.

"Is my kid going to be bullied?

"What is it going to be like
going out in public?"

I'll give one example —
when I came out the barbers,

I'd just had a haircut, and this
convertible BMW was just

driving along, and it pulled up on
the double yellows right next to me,

the top was down, all four people in
the cars got their phones out,

was filming me, recording
me, saying, "Oh, my God,

"you need to grow, mate.
You're a bit short."

And they all laughed.

I gave them the middle finger,
which made them laugh even more,

and they just screeched
off laughing.

I walked back home,
and I just burst into tears.

Some clays I could take, you know,
the laughter, the abuse — it's fine.

It's what I've grown up with.

Then there are other clays where
I'm sick to death of it.

You actually go, "You know what?

"I really wish I was normal,
I really wish I blended in."

Do you think you are happy
with who you are?

I always get asked the question,

"If you could swap to be
a normal person..."

And I'd say, for me, 50/50.

So when, you know, we're out
in the Paralympics,

collecting an amazing amount of
experience from the Paralympics,

Europeans, swimming,
then when you think about that,

you go, "No, not for the world."

But then when you get in the
situations where I've been

campaigning for more recently,
with regards to public,

when you have to miss things out,

you know, miss out on team
sports, etc, like rugby, football,

then, it actually makes you think,

"Actually, I really
wish I was normal."

So, do you think society should
change or we should change?

Because this drug, it's,
like, changing us

and it's not changing society.

It is. It is.

My own personal belief is I want
life to be as normal as possible,

while still identifying as a dwarf
and hopefully being accepted

as a normal member of society.

But I think public
perception won't change

whether we're taking
the drug or not.

It's up to people's
personal opinion.

Do you think you would —
with your children?

If you would like children in the
future. With my children?

You ask some very tough questions.

Over the years, my swimming career
has helped me develop

a sense of self-confidence,

and at the age of 13, I was
the youngest member of Team GB

at the Beijing Paralympics.

There was a lot of pressure,

but also lots of praise
for being who I am.

I think my self-confidence comes
from maybe my talent, my sport.

My job was to keep myself fit
and my body in shape,

so I used to work out all the time.

And that makes you happy

because you see your body
then as like a tool.

I was happy with my body.

But also like I know when someone
says one horrible thing,

like that one comment,

it can really knock
your self-confidence

and then it lingers with you.

So, when you're going out and about,
you're like, you get anxious,

and you get scared that it's
going to happen again.

And when it does happen again, it's
another knock of the confidence.

While vosoritide is still in
trials in the UK,

it has recently been approved for
use in the US by the FDA.

I'm hoping that travelling
to America will give me

a glimpse of what's to come
for children in the UK.

So, this is a jump suit,
but it needs altering.

I'm always, like, one of those
individuals that likes to plan.

I'm a massive planner.

I'll probably wear this top.

These are jeans that are really
comfortable. Altered.

Pedal pusher ones —
so for me they're altered already.

So again, a huge, huge help.

You can try things on, it's normally
about the fit on the bum.

Because dwarfs have quite big bums
and big, like, chunky legs.

As you can see — big thighs.

You try them on for fit, but you
can't comprehend actually how big

or how they are going to fit
because they don't fit you as well.

We have to alter, so we have to,
like, predict how

they're going to fit instead of...

It's like a guessing game, really.

In the US, around 200,000 people
have achondroplasia

and now that the FDA has approved
vosoritide, it could be available

to more than 10,000 children.

But it'll come at a cost of
$350,000 a year, per child.

Silicon Valley in California

is the tech and innovation
hub of the US.

Vosoritide was created just
a stone's throw away.

Great. Awesome, guys.

Are you going to jump off
the rock to show us?

MUFFLED SPEECH

Go for it.

It's going to be cold.

Aw, do it. You'll be all right.

Oh, wow.

THEY CHUCKLE

I've come to meet the Haider family.

They were one of the first
families in the US trial.

Stand up and see them.

And they've since become strong
advocates for the drug.

He likes to swim. That's good!
Let him do it.

Their son, 13-year-old A hm in,
has achondroplasia — like me.

He's been on vosoritide
for three years.

Is this your children?

Those are my three children.
Four, six, eight. Yeah.

Who was the cheekiest?

Cheekiest?

A hm in was my troublemaker.

A hm in was definitely my...

But really cute troublemaker.

Like, really cute.

So you don't want to...

You don't want to scold him or
yell at him.

He'll smile and then come and kiss
you after he's made trouble.

Yeah. That's A hm in. That's my A hm in.

I think I was the troublemaker
in my family. Yeah?

Cos I'm the youngest.

THEY CHUCKLE

Do you use the stools to reach
the kitchen and things?

Now I can reach most of the stuff.

Like, when I was shorter,
I couldn't,

and I would bring out the stool
and stuff to reach it.

We haven't had to do much
with A hm in.

Everything was pretty much...
Expect for the kitchen sink.

Expect for the kitchen sink,
I can reach most of the stuff.

How did you feel about, like,
when he had dwarfism?

Yeah, in the beginning,
it was shocking

because it was entirely unexpected.

It was a matter of educating
ourselves about the cause

and then what it meant in terms
of his medical care

and what the journey ahead would be.

So, once I, you know,
started to get...

Wrap my mind slowly around
what it would mean for him,

then it was, you know,
time to get to work, yeah.

Make sure... Making sure that
he gets the best medical care,

making sure that he's emotionally,
socially supported.

And, you know, I mean,
we're blessed.

He's smart,
he's brilliant and bright,

and the world is for him
to explore and take on,

and we support him in doing that.

Yeah.

When they found out about
Ahmin's achondroplasia,

the family set up
a foundation that raises money

for research into dwarfism.

They have already raised
over $750,000

with the goal of reducing
the need for surgery

and daily pain in children with
the condition.

Tonight, I'm attending one
of their fundraisers.

Do you think medical professions
should cure dwarfism?

I think we as scientists must
find all the causes

and the cures for everything.

But how we use it,
who uses it, is up to them.

Guys, we're going to start
the presentation.

Thank you so much for staying back.

But before we start,

I want to introduce someone
very, very special.

Ellie is a five — five-time —
gold medal list

and she's like the star...
Thank you. Thanks.

The star in the UK.

So, she's not American,
so she's not representing us,

but we're still awesome!
Thank you, thanks. Still awesome.

So, she beat all the Americans
for the gold medal.

Do you remember that time?

LOW CHUCKLING

ELLIE HESITATES
MAN: Of course she does.

Just being glad it's over.

Go ahead, say something.
Say something, please.

Yeah, just... All right. Thank you,
Ellie. Thanks for coming.

I mean...
APPLAUSE

Yeah, thank you for having us.

We're doing a documentary
for the BBC about dwarfism...

A little bit closer
to your mouth, yeah. Yeah.

...and the drug that's coming out.

So I'm a Paralympic swimmer,
and this is me from Rio 2016 —

my third Paralympics.

It feels strange to be celebrated
for my achievements as

a Paralympian in this environment.

If drugs like vosoritide had been
around when I was a kid,

they might never have happened.

Thank you so much for being
the audience today

for our Growing Stronger
2021 update.

Your love and your care continues
to mean a lot to us,

so thank you very much
for being here tonight.

As you may know,
we were blessed with A hm in...

A hm in, can you wave?
..In the year 2008.

A hm in has achondroplasia.

How are you feeling?

Yeah. A bit uncomfortable.

All these big businessmen,

all raising funds to cure me,
people like me.

It's, yeah, it's quite...

...crazy, I think.

What do you think they should be
giving their money towards?

To curing worldwide poverty,
climate change,

cancer, brain tumours,
heart problems,

disability awareness in all
different countries,

the acceptance of different people.

Not about making someone taller,
making someone different.

Everyone was so welcoming,

but it's hard being in
an environment that is

so comfortable with the idea
that dwarfism is a problem.

Oh, gosh.

Yeah, I feel quite like emotionally
drained this morning.

PHONE LINE RINGS

Hello! Hello. Are you all right?

OK, hang on a minute...

OK, so we can just about hear you.
So that's OK.

I'm calling you on Wi-Fi in
the hotel.

I'm hoping my mum and dad
can help me

make sense of last night.

Well, what upset you about it?

What bit of it upset you?

Erm, I don't know,
maybe feeling sorry for the son.

Yeah. But it's like, it's hard
because it's, like,

it's their way of life, isn't it?
Do you know what I mean?

And, like, I've been
very privileged and very lucky

that I've been brought up in such
a good, positive way.

Everyone's different at
how they handle things.

Do you think if when I was a baby,
and we had... Yeah.

I know you got, doctors said
to you about things like

leg-lengthening, and again, my
eight plates when I was growing up,

do you think if they gave you
a decision about this drug, what...

Gave you an option about this drug,
what do you think

you would have thought about it?

I think... I think we would have
thought as we think now.

If there was an identified issue,
an identifiable and identified issue

that could be specifically impacted
positively by this drug,

then, yes, we probably would have
thought about it long and hard

and may well have said yes.

Yeah. But there is a tendency,

it seems, to regard dwarfism
as some kind of disease.

Yeah. And it's not.
And that's just...

And it's not. It's daft.

I want to know how A hm in feels
about his dwarfism.

Being in California,

we decided to meet up for
a spot of surfing.

How does it feel?

Yeah, it's quite tight, but I think
its going to keep me warm.

The dance...

LAUGHTER

I crashed on that one.

Oh, it's actually really vicious.

Yeah. They're really vicious waves.

They don't look it,
but they are, aren't they?

That's me done swimming for
the day. Oh, really?

I've done enough.
Right, no more. Come on.

No more for today? No.

A hm in wants to be on this drug.

He's only 13 and I wonder what
his main motivations are?

In the playground at primary school,

I think I was in about Year One

and I remember being like in
the corner,

like, playing hide and seek
and do you know

when it just clicked, like,
why am I small?

Like, why am I different
to my friends in school?

What age did you realise you
were different?

I think it was at one point when

I realised my younger brother,

who's two years younger than me,

I think it was around
the age of, like,

I think he was five, I was seven.

I realised, "Hey, why is
he taller than me?"

How did that feel?

I'm pretty sure he was just...
He thought he was older than me

for a significant amount of time.

He thought he was older
than me, yeah.

So what was the reasoning?

Like, why did you decide
to take the drug?

Before I started the drug, I had,
like, a lot of growing pains,

and my knees, they would
constantly hurt,

like every other night,
I would just be in pain.

And I'd never been on
a proper roller-coaster before —

I was always too short to go.

Is there anything that you would
change about yourself?

Well, I would want to be
taller. Yeah.

Would you want to be?
Yeah, I would want to be taller.

So for us, the world,
in a sense, is quite a big place.

Society is set up for tall people.

But if that changed and everyone was
on the same level playing field,

would that change your view on how
you feel to be tall?

Yeah, I feel... I might not do it.
I might not take the drug.

But we don't live in an ideal world.

Right here, right now,
are you happy with who you are?

I'm satisfied with who I am,
but I want to be better.

Being taller will give me
more opportunities.

It would make my life easier.

It would put me on a level playing
field with more people.

I had so much fun today surfing
and seeing A hm in.

Like, I could have chatted
with him for hours.

As a 13-year-old,
you're finding yourself,

you're finding your way
as you're going through puberty —

it can be quite tough.

He wants to be stronger,
he wants to toughen up

so he can stand up against
the world in a sense.

It makes me sad that A hm in wants
to normalise his body.

But maybe I'm being idealistic.

Even if the treatment of people
with dwarfism starts to change

we'll still be living in and
adapting to a world

built for average-height people.

WOMAN: It is a bit of
a reach to the tap.

Look at me, I'm a like a
little ballet class —

going on my pinkies and my toes.

And what's also annoying is
the towels as well.

Oh, gosh.

Having to reach,
reach for the stars.

The climbing that you have
to do to get them.

How do you actually get them?

So, I jump on that bath
and then reach really high

and just try and like,
jump and risk it.

I'm even doing that
at my flat in London,

like sometimes when the shower head
gets knocked off,

I have to like climb up
and then put it up.

Yeah, this is annoying —
and then I fling it.

Yes, whoo. Go like this.

That's a good way.

SHE CHUCKLES

You just look into it.

Like you use anything is
an obstacle,

or a platform to get you higher.

Or you could turn the bin upside
down and make that into a stool.

It's adaptability.
I can adapt to change.

Yeah, I like the way you
just leap around.

Yeah, I'm like a little monkey.

THEY LAUGH

Like a little chimpanzee.

Drug therapies weren't
an option when I was growing up.

My parents were offered surgical
limb—lengthening procedures,

but they decided not
to put me through the surgeries.

Chandler made the decision
herself to undergo

a series of these painful procedures
when she was 16 years old,

and I'm keen to find out why this
was so important to her.

CABARET MUSIC PLAYS

When I was younger,
I started dance and, you know,

you would always get like
a taping of the recital,

and I always, I watched them every
year with my mom.

And there was this one year when
I was probably age 12, 13,

and that was the moment
where it was just like,

"Wow, like, that's what I look like.

"That's how people see me."

So, you've got achondroplasia.

At the moment you don't show those
average-type looks,

the short arms,
the short legs like me. Mm-hm.

Tell me a bit more about Chandler.

When I was 16 years old,
I did my first leg-lengthening,

and then a year after that,
I lengthened my arms.

And then a little bit of
a year after that,

I lengthened my legs again.

I gained about six inches
in height.

In limb—lengthening surgeries,
bones are broken and held apart

by a frame around the leg or arm.

As new bone grows to fill
the break over months or years,

screws are continuously adjusted on
the frame to widen the gap.

It's not too bad. Oh!
OVERLAPPING SPEECH

You're like Superwoman.

If I'm being honest, you know,
it wasn't the body

that I like felt like I was
supposed to be born into.

Yeah, yeah. So that's just how,
you know, that's how I felt.

So what were the reasonings
for your arms

to get done as well as your legs?

For that, mainly so I could sit
a further distance away

from the steering wheel
when driving,

and also just dealing with,
you know, feminine hygiene.

Like, I mean, I was able to manage
it all pretty well.

But, you know, it is easier
for me now to, you know.

Put tampons in and stuff. Right.

Cos I think that's one thing,
isn't it,

that I think the dwarf community,

we don't really speak about much,

but it does have those challenges

with it's not just about reaching
light switches

or reaching things outside...

Right, but it's like doing things
with your own body.

I could never really fully reach
the top of my head,

and so, like,
I love now being able to like,

throw my hair up into
a messy bun like right here

on the top of my head.

Do you think it's worth it?
Do you feel...

I always say it was worth it for me,

and those I know who have gone
through it say the same.

It was worth it for them.

So, yeah, I mean, I would not
change a thing about

who I am or how I am today.

I've never been unhappy with my body
like Chandler used to be,

but I can see how the mental
pressure could feel overwhelming.

One of the things spoken about is
how disabled people,

the likes of me — being a woman,

being a dwarf — how do we cope
with the hygiene issues?

What do we do?

I remember as a kid when
I hit my periods,

I remember my mum like going around
and chatting to other mums

who had children with dwarfism and
asking them about things.

Things like... Especially
with me being swimmer,

using a tampon, not using a pad.

It's about — how do you reach?

How do you get that technique
to get it in?

And it's about educating yourself
and chatting to people,

but I'm sure, if there's
a will, there's a way.

I can't believe we're in Hollywood.

Like, I never thought I'd go
somewhere like this.

My first time coming to America,
I went to the World Dwarf Games —

it was part of
the Little People Convention.

I remember being a kid,
I was bamboozled, really,

by the sheer amount of people
with dwarfism.

You're with people that look like
you, that are the same as you.

So when you leave,
it's quite upsetting

because it's like — back to
the real world, back to reality.

And I remember even as
a kid, like, I used to get home

and cry because I would be sad that
the weekend or the week was over.

In the US, there is vocal
opposition to vosoritide

and I've come to Hollywood
to sit in on a medical podcast

with campaigners Leah,
who works in health care,

and joe, who specialises
in bioethics.

Hello, I'm Dr Tony O'Donnell PHD,
thanks for joining my podcast.

I'm excited to have two amazing
guests with us today.

We're questioning
everything medical.

What is it that you wish
to discuss more than anything

else that would make
the world a better place,

not only for people who are smaller,
who have challenges

or who are suffering with
disability,

what would you like to see change?

Well, I would like
to see us not talking about

suffering with disability.

Right, exactly.
HE LAUGHS

Yeah. I mean, I think that
a reframing of disability

as not necessarily about
suffering at all.

"Suffering." Yeah, no,
that's not right.

What did... We're not suffering
with dwarfism or a disability.

Those two often go in
the same sentences. Yeah.

Yeah, we need to divorce
the concepts from each other.

I like that — divorce the
concepts. Exactly.

And stop putting labels
on people.

The assumption that
the folks that were developing

the drug are working on is that
dwarfism is a problem

that needs to be fixed.

You know, this is a solution
that's looking for a problem, right?

Largely, the folks in the dwarf
community celebrate our difference

and sort of see it as something
that adds to the world

and adds to our experience.

I like that.

As a family, why...
Why did you feel like —

this is the thing that I need to
talk about?

There's a piece of
the story that's missing.

There's a piece
of this that's not being said,

and I think that we feel pretty
passionate about

adding that piece of this story
to make sure it's being told.

What... What do you think?

I feel like this drug is an
existential threat to

the dwarf community in that I think
that it will be very hard for

a child growing up to get this drug
and be told whenever

they have to get the injection,
be told over and over again,

"You're not OK as you are.

"You need to change, you need to be
something other than

"this body that you were born with."

I think from the parent perspective,
they are thinking

that they're doing this
out of love.

Yeah, I was about to say that.

Like, I think that's where
it's complicated

and I think that where, when you
have different identities,

the message that you mean
to give may not be the message

that they are receiving, right?

And then the child is hearing,
"There's something wrong with me

"that needs to be fixed," right?

Listening to joe and Leah
made me think about

the different reasons parents
and their children might have

for taking the drug.

Before I leave America, I want to
speak to Munira, Ahmin's mum.

A hm in has seen improvements
in his hearing, breathing,

and a reduction in pain from
taking vosoritide,

but I want to find out if there were
any other reasons

that Munira wanted him to be on it.

I can't get my knee down,

but my flexibility in this little
area isn't the best,

so I just try
and stretch as much as I can.

Yeah. Yeah, get your toes.

That's what they say, right?
Bring your best self.

Yeah. And stretch.
And you do your best.

So, when did you find out
that A hm in was a dwarf?

I found out that A hm in is
a little person

at his nine-month well-visit to
the paediatrician.

They'd been charting his body length
and his head circumference,

of course, and seeing it
get off the charts,

and his body length was, you know,
just below the fifth percentile.

And I remember my paediatrician
went to, went in,

gave me a reference to
the geneticist at Stanford Hospital,

gave me a hug.

She said, "We're here for you."

And that was the end
of my appointment.

Oh, wow. And that's it? That's it.

How did it make you feel?

I knew he was going to be OK
health-wise, for the most part.

But I remember wondering
if he would...

If he would find love.

I want him to experience as
much love and as much happiness.

Yeah. Because of his dwarfism,
I don't want him to experience

any less of life or opportunity.

What else was going through
your head?

I was... I was sad. I was grieving.

I also remember a very sad moment
when I remember I was taking him

to yet another doctor's visit,
and I drove by the park

and it was a beautiful, sunny day,

and there were moms just playing
with their kids in the park.

And I just wanted to be that mom

who could play with
their kid in the park. Yeah.

I was like, "OK, here I am,
taking my child

"to yet another doctor's visit."

And I just wanted to be in
the park. Yeah.

You know, on the bench,
on a beautiful, sunny day.

That must've been hard.
That was a hard moment.

Yeah, that's what my parents
did as well.

Yeah. Yeah, exactly the same.
Yeah. You all right?

I'm OK. I'm OK. Yeah?

It's just I don't think these tears
will ever stop coming.

It's OK. You're a mother —
like, that's what you want.

You want the best for him and you
worry about all of your children.

And so I just...

You want to do something about it.

Yeah. And not just sit there.

You can't just sit back
and let things happen to you.

You want to solve the problem.

You want to grab
a problem by its horns and,

you know, do something about it.

The more families I meet,
the more I'm learning about

the conflicting pressures
affecting parents' decisions

to try vosoritide.

It's changed my view of it in
a massive way, I think.

I've realised that everyone
has their choice.

I didn't really think about
the mental state of

the individuals on the drug

or the ones making that decision
and that choice.

Dwarfism in society,
it sometimes can be pretty tricky,

tolerating the
name-calling, all that,

and I think the parents worry
about that for the future.

When they're children, they can
protect them from all

those types of things, but later on
in life, it must be a massive worry.

I can see now why some parents
might consider

the drug when they are
so worried about

the potential mental stress
of growing up smaller

in an average-height world.

Now I'm home,
I want to know how close we are

to vosoritide being approved here.

And what it will mean for
the dwarf community in the UK.

At the moment,
around 30 children are

on the vosoritide trial in the UK.

If it is approved for use on
the NHS, hundreds of children

will be able to access it.

Oh, hello, Andy.

Professor Andrew Ustianowski is

a leading NHS adviser on
clinical research.

So he can give me
a better idea of how much input

the dwarf community are given in
the approval process.

The regulatory authorities will
discuss with communities

and with others about where this
would fit in with lifestyles,

where it would fit in
with society, etc.

We don't know specifically...

The drug won't be available in
the UK outside of the trial

until at least next year.

But children on the trial are
starting to see changes.

Yeah, teach me some moves.

Ooh! Oh, wow.

I've got a full bladder
so it might...

THEY GIGGLE

In Richmond, Talia has just had
a medical review

to see how the drug is
affecting her.

So, how's Talia been?

She's great. Yeah,
she's been doing really well.

Since we last saw you, she's joined
netball club at school

and hockey club. Oh! Yeah.

And how is she finding
being on the drug,

has there been any changes since
I last saw you guys?

No, not really.

She had her review at the hospital,

she'd done about six centimetres of
growth in the last year,

so about two centimetres more than
the average person with dwarfism.

Oh, wow.

Talia will be on vosoritide until
she's a teenager

and finishes growing.

Although there's been medical
benefits for Talia,

Rocana has faced some backlash
for her decision

to put her daughter on the trial.

It's generally online, actually,

is where most of the emotive opinion
has been coming from.

Things like, "You're trying
to eradicate dwarfism.

"Why would you do this
to your child?"

Erm...

"Your child isn't old enough to
know, so why are you doing it?"

That... That sort of message.

I bet that's quite
hurtful, isn't it?

Erm, it can be, but it's also meant
that we've been able

to support other people
with dwarfism

who would like to go on the drug

or want more information around
what we've been through.

I mean, Talia has opened up
a whole new world to me,

and I feel really lucky.

What's this? Basically,
like a chewy sweet.

Oh, are they? Mm.

Give me a little sugar
rush, won't it?

If I was offered the drug now,
I think I would still say no.

I've been very lucky
and very fortunate

that I have grown up quite fit,
quite able, quite athletic.

But I can see it's not
an easy situation for parents

and they are trying to make
the best choice for their family.

Do you enjoy school?

Uh, yes.

What do you enjoy most about school?

Like, I enjoy playing
with my friends.

Because, like, yeah, they don't
really care if I'm different.

Like, they don't treat me different.

Differently? Yeah.

Do you know that you're different?

Erm, yeah. Well, like... Mm.

Do you think it's cool being small?

Mm. What are the positives?

I... Basically, what you said.
Like, I'm different,

I'm unique, like, we're unique,

we're not just the same as
everyone else.

It's cool to be different,
isn't it?

It's hard to argue
with medical advancements

that could potentially reduce pain
and for some be life-saving.

Just a little. Ohh!

But I worry about a future where
we can offer these drugs

to all children born with dwarfism,

even those who are happy
and healthy.

I think the question is,

if society was accepting of
dwarfism, if it was seen as a norm,

I don't think when an individual
gave birth to a child with dwarfism,

I don't think they would
choose this drug,

because they would be aware
of what dwarfism is,

that it's amazing, that it's great,
their child is healthy,

it's happy, they're all OK
then, yeah,

I think they would just go
and do what everyone else is doing

and just carry on with
a happy, healthy baby.

I can't help but think
if I'd been given it,

I might never have achieved
all that I have.

For me, it sends a message
that not being average height

is a barrier to success.

And it's not.