1
00:00:06,720 --> 00:00:11,040
WOMAN: I was in dance all of my life.
It was the thing I did.

2
00:00:11,200 --> 00:00:16,520
Every year, we had the big
spring recital and they record it.

3
00:00:16,680 --> 00:00:20,440
And there was this one year,
I was, maybe 14.

4
00:00:20,600 --> 00:00:22,240
My mum, she played it

5
00:00:22,400 --> 00:00:26,960
and for some reason, I asked my mum,
I'm like, "Is that how I look?"

6
00:00:27,120 --> 00:00:29,120
And my mum said, "Yes."

7
00:00:29,280 --> 00:00:33,800
But, you know,
I still obviously knew I was shorter

8
00:00:33,800 --> 00:00:36,080
and that I had dwarfism
and everything,

9
00:00:36,080 --> 00:00:38,600
but for some reason in my head,

10
00:00:38,600 --> 00:00:42,560
I looked as uniform
as all of the other girls.

11
00:00:43,600 --> 00:00:46,840
And after I saw that video,

12
00:00:46,840 --> 00:00:52,520
I realised I wasn't going to be
like everybody else.

13
00:00:52,520 --> 00:00:55,960
I was going to look like that
for the rest of my life.

14
00:00:58,080 --> 00:01:00,000
MARC FENNELL: Around the world,

15
00:01:00,000 --> 00:01:03,480
one in 25,000 children
are born with achondroplasia,

16
00:01:03,480 --> 00:01:06,120
a type of dwarfism
which stunts growth

17
00:01:06,120 --> 00:01:09,040
and can lead
to dangerous health problems.

18
00:01:09,040 --> 00:01:11,480
But now,
scientists have developed a drug,

19
00:01:11,480 --> 00:01:14,520
which they believe
can treat the condition,

20
00:01:14,520 --> 00:01:17,840
allowing patients
to grow to an average height.

21
00:01:17,840 --> 00:01:19,840
It's being hailed as a miracle,

22
00:01:19,840 --> 00:01:23,400
but do those who are born small
want to grow tall?

23
00:01:37,880 --> 00:01:39,760
Da, da, da...

24
00:01:42,440 --> 00:01:44,960
Ta. Thank you.

25
00:01:44,960 --> 00:01:47,040
MARC: In the world of modern science

26
00:01:47,040 --> 00:01:50,040
Casper and his mum Daisy
are a pretty big deal.

27
00:01:52,640 --> 00:01:55,200
14-month-old Casper
has achondroplasia,

28
00:01:55,200 --> 00:01:57,600
the most common form of dwarfism.

29
00:01:57,600 --> 00:01:59,840
But thanks
to a scientific break-through,

30
00:01:59,840 --> 00:02:02,040
Casper may outgrow his condition.

31
00:02:03,480 --> 00:02:05,560
- Hello. How are you?
- Good Thank you. How are you?

32
00:02:05,560 --> 00:02:07,720
- I'm good. Who's this?
- This is Casper.

33
00:02:07,720 --> 00:02:09,200
Hello, Casper. How are you?

34
00:02:09,200 --> 00:02:11,360
Woo. I gotta wave.

35
00:02:13,200 --> 00:02:14,400
Since he was five months old,

36
00:02:14,400 --> 00:02:19,520
Casper has been part of a global
trial for a drug called Vosoritide.

37
00:02:19,520 --> 00:02:22,560
Here they are. Oh, here he is.

38
00:02:22,560 --> 00:02:25,720
Hey, who's this guy?
Who's this grown-up boy?

39
00:02:25,720 --> 00:02:27,080
DAISY: Yeah, I know.

40
00:02:27,080 --> 00:02:29,960
Doctors believe the drug
will help Casper, and kids like him,

41
00:02:29,960 --> 00:02:31,360
to grow at an average rate.

42
00:02:31,360 --> 00:02:34,280
- And how are the injections going?
- The injections are going well.

43
00:02:34,280 --> 00:02:35,680
And who's doing them, mainly?

44
00:02:35,680 --> 00:02:37,480
- Myself and Justin.
- Yep.

45
00:02:37,480 --> 00:02:39,240
- And my mum, sometimes.
- That's good.

46
00:02:39,240 --> 00:02:40,400
She got the hang of it.

47
00:02:40,400 --> 00:02:41,680
It's good to have mum trained

48
00:02:41,680 --> 00:02:43,360
because at least
you can sort of have a day off.

49
00:02:43,360 --> 00:02:45,200
Yeah. Absolutely.
That's exactly right. Rest for mum.

50
00:02:46,200 --> 00:02:49,600
Geneticist Dr Ravi Savariryan
is leading the trial.

51
00:02:49,600 --> 00:02:52,600
He's known Daisy
since Casper was just two weeks old.

52
00:02:52,600 --> 00:02:56,000
When I first met Daisy,
she had all of those emotions.

53
00:02:56,000 --> 00:02:58,960
Which you can imagine,
she was delighted to be a mum.

54
00:02:58,960 --> 00:03:03,600
But she was terrified
that her child had achondroplasia.

55
00:03:03,600 --> 00:03:05,560
Who's this? Who's this?

56
00:03:05,560 --> 00:03:10,760
My job was to try and give her
accurate, up-to-date information.

57
00:03:10,760 --> 00:03:14,400
So then she could get
some control back over

58
00:03:14,400 --> 00:03:17,600
what was
a very disempowering situation.

59
00:03:17,600 --> 00:03:20,240
You're going to crawl
right off the edge, aren't you?

60
00:03:20,240 --> 00:03:21,760
DAISY: He's coming for you.

61
00:03:21,760 --> 00:03:23,680
Achondroplasia affects bone growth.

62
00:03:23,680 --> 00:03:27,000
In adulthood, patients typically
develop large heads,

63
00:03:27,000 --> 00:03:30,440
regular-sized torsos
and very short arms and legs,

64
00:03:30,440 --> 00:03:32,040
which limits their height.

65
00:03:32,040 --> 00:03:35,040
Does he stand at all unsupported
with a...holding on? No? Not yet.

66
00:03:35,040 --> 00:03:36,480
- Not yet.
- Yeah.

67
00:03:36,480 --> 00:03:39,400
Ravi believes that starting
a few months after birth,

68
00:03:39,400 --> 00:03:41,520
a daily injection of Vosoritide,

69
00:03:41,520 --> 00:03:44,920
will help a child's bones
grow at an average rate.

70
00:03:44,920 --> 00:03:48,240
With Vosoritide,
how does it actually work?

71
00:03:48,240 --> 00:03:51,640
Achondroplasia
is like trying to drive your car

72
00:03:51,640 --> 00:03:53,000
with the handbrake on.

73
00:03:53,000 --> 00:03:57,400
This medication basically comes in
and takes off that handbrake

74
00:03:57,400 --> 00:04:00,840
so that bone growth can resume
as it would have otherwise.

75
00:04:02,560 --> 00:04:04,240
In babies with achondroplasia,

76
00:04:04,240 --> 00:04:06,200
an important gene called FGFR3

77
00:04:06,200 --> 00:04:09,520
is, medically speaking,
considered faulty.

78
00:04:09,520 --> 00:04:12,120
FGFR3 regulates bone development,

79
00:04:12,120 --> 00:04:14,360
but a rare mutation in the gene

80
00:04:14,360 --> 00:04:17,720
causes bones to grow slower
than normal.

81
00:04:17,720 --> 00:04:20,840
An average two-year-old
grows six centimetres a year,

82
00:04:20,840 --> 00:04:25,080
while a child with achondroplasia
grows about four centimetres a year.

83
00:04:25,080 --> 00:04:27,200
When bone growth stops
in early adulthood,

84
00:04:27,200 --> 00:04:30,800
the result is dramatic reduction
in height and proportions.

85
00:04:30,800 --> 00:04:32,920
Enter Vosoritide.

86
00:04:32,920 --> 00:04:35,120
When administered
as a daily injection,

87
00:04:35,120 --> 00:04:36,800
a molecule within Vosoritide

88
00:04:36,800 --> 00:04:39,280
interferes with
the faulty gene pathway,

89
00:04:39,280 --> 00:04:42,080
allowing bones to grow
at a regular rate.

90
00:04:42,080 --> 00:04:43,920
The drug assists the faulty gene,

91
00:04:43,920 --> 00:04:46,840
minimising the effects
of achondroplasia.

92
00:04:46,840 --> 00:04:48,840
Or at least, that's the theory.

93
00:04:48,840 --> 00:04:50,960
I guess what I'm interested in
is the why?

94
00:04:50,960 --> 00:04:52,720
Like, why does it matter to you?

95
00:04:52,720 --> 00:04:54,760
There's actually
500 different types of dwarfism.

96
00:04:54,760 --> 00:04:57,560
Most people think it's a condition
that just affects stature

97
00:04:57,560 --> 00:05:01,080
and they're totally unaware
of the huge medical complications

98
00:05:01,080 --> 00:05:03,120
that patients can have.

99
00:05:03,120 --> 00:05:06,800
Alrighty, Mister, let's see
if we can hook these up.

100
00:05:06,800 --> 00:05:10,200
There's an increased risk
of sleep-disordered breathing,

101
00:05:10,200 --> 00:05:12,480
having to have an operation
on your spine.

102
00:05:12,480 --> 00:05:13,560
In the first five years,

103
00:05:13,560 --> 00:05:16,440
the incidence
of sudden infant death syndrome

104
00:05:16,440 --> 00:05:19,360
is 50 times that
of a child without achondroplasia.

105
00:05:19,360 --> 00:05:22,640
So, Casper is a really healthy child
right now

106
00:05:22,640 --> 00:05:25,480
with a potential
whole list of problems.

107
00:05:25,480 --> 00:05:27,320
And I hope this medication will mean

108
00:05:27,320 --> 00:05:30,560
that none of those problems
will ever come to fruition.

109
00:05:30,560 --> 00:05:33,440
Do you want to help me hold that?

110
00:05:33,440 --> 00:05:35,360
The early data is promising.

111
00:05:35,360 --> 00:05:37,880
Results suggest
patients achieve average growth

112
00:05:37,880 --> 00:05:40,600
after three to six months
on the drug.

113
00:05:40,600 --> 00:05:43,200
Good job. That's that one done.
Good job.

114
00:05:43,200 --> 00:05:45,200
The study is ongoing,

115
00:05:45,200 --> 00:05:48,960
with 121 kids enrolled
in seven countries around the world.

116
00:05:48,960 --> 00:05:51,280
(CASPER CRIES)
- I know.
I know you don't like stretching.

117
00:05:51,280 --> 00:05:55,600
For them, the cost of growing up
is a daily injection at home,

118
00:05:55,600 --> 00:05:58,960
followed by frequent hospital visits
for intensive testing and study.

119
00:05:58,960 --> 00:06:00,920
Good boy.

120
00:06:00,920 --> 00:06:03,000
And there's
an even tougher pill to swallow.

121
00:06:03,000 --> 00:06:04,400
Being a controlled study,

122
00:06:04,400 --> 00:06:08,480
one in two patients
receive a placebo
in their first year of the trial,

123
00:06:08,480 --> 00:06:12,160
meaning Casper may not even
be getting Vosoritide.

124
00:06:12,160 --> 00:06:15,200
So, there's a 50/50 chance
that he's on the inactive dose.

125
00:06:15,200 --> 00:06:16,880
Yes.

126
00:06:16,880 --> 00:06:18,640
How do you feel about that?

127
00:06:18,640 --> 00:06:21,400
Initially, I was hesitant.

128
00:06:21,400 --> 00:06:23,960
Because giving Casper the injections
to start with

129
00:06:23,960 --> 00:06:26,120
when he wasn't used to it
was quite distressing.

130
00:06:26,120 --> 00:06:30,320
But with time, Casper's getting used
to it, I'm getting used to it.

131
00:06:30,320 --> 00:06:33,800
And as you know, Daisy, the good
thing is that whatever he's on,

132
00:06:33,800 --> 00:06:38,240
inactive or active, after one year
he'll have access to the active drug

133
00:06:38,240 --> 00:06:39,800
until he finishes growing.

134
00:06:39,800 --> 00:06:41,040
The good news for Casper,

135
00:06:41,040 --> 00:06:44,360
is that his one-year anniversary
is just a few weeks away.

136
00:06:46,040 --> 00:06:48,400
But the reality
is there is no guarantee

137
00:06:48,400 --> 00:06:50,360
Casper, or any trial participant,

138
00:06:50,360 --> 00:06:53,960
will experience enhanced growth,
or safely finish the trial.

139
00:06:53,960 --> 00:06:56,920
For all involved
it is a giant leap of faith.

140
00:06:56,920 --> 00:06:59,760
DR RAJIV: People like Daisy
who, you know,

141
00:06:59,760 --> 00:07:02,520
put their children up
for these trials,

142
00:07:02,520 --> 00:07:05,360
which are still in early stage,
experiments,

143
00:07:05,360 --> 00:07:07,400
it's a hugely courageous thing to do.

144
00:07:07,400 --> 00:07:10,080
She's putting her trust in us,
in me,

145
00:07:10,080 --> 00:07:13,280
that this medication
is going to benefit her child

146
00:07:13,280 --> 00:07:14,960
and not harm her child.

147
00:07:14,960 --> 00:07:17,320
So, they are the absolute heroes
of this.

148
00:07:17,320 --> 00:07:18,600
They're the pioneers of this

149
00:07:18,600 --> 00:07:21,360
that's going to set the stage
for the future.

150
00:07:26,200 --> 00:07:29,080
DAISY: It's a lot of hard work.
It's tough at times.

151
00:07:29,080 --> 00:07:31,240
But he's the love of my life

152
00:07:31,240 --> 00:07:34,160
and I just want
to do as much as possible,

153
00:07:34,160 --> 00:07:38,160
to give him
the best possible start to life.

154
00:07:38,160 --> 00:07:41,680
All over the world, unsuspecting
home's like Daisy's and Justin's

155
00:07:41,680 --> 00:07:43,920
are where the trial plays out
every day.

156
00:07:43,920 --> 00:07:44,920
(KNOCK ON DOOR)

157
00:07:44,920 --> 00:07:46,880
- Hello.
- Hi. How are you?

158
00:07:46,880 --> 00:07:47,960
Hello. How are you?

159
00:07:47,960 --> 00:07:49,280
It's Casper!

160
00:07:49,280 --> 00:07:50,800
Say, hi, Marc.

161
00:07:51,960 --> 00:07:53,520
- Good wave. Good wave.
- Good boy.

162
00:07:53,520 --> 00:07:55,320
- Come on in.
- Ta. Thank you.

163
00:07:55,320 --> 00:07:57,280
How you been?

164
00:07:57,280 --> 00:08:00,840
So, we're just about to get
Casper's Vosoritide injection ready
for the day.

165
00:08:00,840 --> 00:08:06,280
Essentially we just need to mix
the water with the powder in the vial

166
00:08:06,280 --> 00:08:08,440
to create the liquid.

167
00:08:08,440 --> 00:08:12,760
Then we wait a couple of minutes
and then get the injection ready.

168
00:08:12,760 --> 00:08:14,440
(CASPER CRIES)

169
00:08:14,440 --> 00:08:17,160
It's alright, darling.
It will only take a second.

170
00:08:17,160 --> 00:08:19,480
Shh. Shh.

171
00:08:19,480 --> 00:08:21,200
Well done. Good boy.

172
00:08:21,200 --> 00:08:22,640
There we go. It's OK.

173
00:08:25,080 --> 00:08:26,520
Back to normal again.

174
00:08:28,040 --> 00:08:31,000
- So, you do this every day.
- Every day.

175
00:08:31,000 --> 00:08:33,360
So, how long
is he going to need to do these?

176
00:08:33,360 --> 00:08:35,520
Until he reaches
his final adult height.

177
00:08:35,520 --> 00:08:37,960
So, until puberty finishes.

178
00:08:37,960 --> 00:08:39,680
That's two decades.

179
00:08:39,680 --> 00:08:42,080
- Yeah, about two decades, yeah.
- Jeez. Right.

180
00:08:42,080 --> 00:08:46,440
For Daisy, for Justin,
this is all a huge commitment.

181
00:08:48,120 --> 00:08:51,440
Life with little Casper is a fair bit
different to what they were expecting

182
00:08:51,440 --> 00:08:54,040
when they first got pregnant.

183
00:08:54,040 --> 00:08:55,760
DAISY: It was my first little bub.

184
00:08:55,760 --> 00:08:58,720
And I'd wanted to be a mum
for a very long time.

185
00:08:58,720 --> 00:09:00,360
So we were very excited,

186
00:09:00,360 --> 00:09:03,960
until the point where we went
for our 12-week scan,

187
00:09:03,960 --> 00:09:07,000
and we were told
that something was wrong.

188
00:09:07,000 --> 00:09:08,920
But they weren't sure what.

189
00:09:11,000 --> 00:09:12,800
JUSTIN: When he was born,

190
00:09:12,800 --> 00:09:17,640
our doctor said he was pretty sure
that he had achondroplasia.

191
00:09:17,640 --> 00:09:20,160
But he couldn't confirm it.

192
00:09:20,160 --> 00:09:24,000
And then we brought him home
and when he was 10 days old,

193
00:09:24,000 --> 00:09:28,120
they gave us a call and said,
"Yeah, it is what we suspect."

194
00:09:29,440 --> 00:09:30,720
You want that one?

195
00:09:32,680 --> 00:09:35,880
I felt
pretty ill-equipped at the time,

196
00:09:35,880 --> 00:09:39,320
but our hospital referred us
to Dr Ravi.

197
00:09:39,320 --> 00:09:42,720
And he sort of just said,
"It's going to be OK."

198
00:09:42,720 --> 00:09:45,720
And we were told about the trial.

199
00:09:45,720 --> 00:09:48,600
And so, how did you
weigh up the decision

200
00:09:48,600 --> 00:09:51,360
to put Casper through the trial?

201
00:09:51,360 --> 00:09:55,520
I think I had anxieties about
what his future would look like,

202
00:09:55,520 --> 00:09:57,640
what his life would look like.

203
00:09:57,640 --> 00:10:01,080
Worrying about him getting bullied
at school for his appearance.

204
00:10:01,080 --> 00:10:04,320
But, yeah, ultimately the decision
to become a part of the trial

205
00:10:04,320 --> 00:10:07,880
wasn't aesthetic or cosmetic for me.

206
00:10:07,880 --> 00:10:11,840
A lot of my decision was rooted in
health complications

207
00:10:11,840 --> 00:10:14,280
and avoiding as much of that
as possible.

208
00:10:14,280 --> 00:10:17,840
Have either of you,
before the birth of Casper,

209
00:10:17,840 --> 00:10:21,640
ever had any dealing with short
statured people, little people?

210
00:10:21,640 --> 00:10:23,880
- Achondroplasia at all?
- No.

211
00:10:23,880 --> 00:10:28,200
I guess one of the complications is,
you're two average height parents

212
00:10:28,200 --> 00:10:30,080
making decisions
for a really young child

213
00:10:30,080 --> 00:10:32,600
that are gonna affect him
for the rest of his life.

214
00:10:32,600 --> 00:10:35,240
How do you feel
like you're handling that pressure?

215
00:10:35,240 --> 00:10:39,440
There are days where,
you know, you still doubt yourself

216
00:10:39,440 --> 00:10:42,200
and go, like,
"Am I doing the right thing?

217
00:10:42,200 --> 00:10:43,960
"Am I doing everything that I could?"

218
00:10:43,960 --> 00:10:47,040
As his parents we have
a duty of care as it were.

219
00:10:47,040 --> 00:10:48,520
We want to give him the best start.

220
00:10:48,520 --> 00:10:50,920
So, we are
two average height parents,

221
00:10:50,920 --> 00:10:54,800
but two average height parents
doing the best we can.

222
00:10:54,800 --> 00:10:58,360
Statistically,
80% of kids with dwarfism

223
00:10:58,360 --> 00:11:00,560
are born to average height parents,

224
00:11:00,560 --> 00:11:04,080
meaning the decision to put children
into the Vosoritide trial

225
00:11:04,080 --> 00:11:08,720
is often made by parents with little
to no prior experience of dwarfism.

226
00:11:08,720 --> 00:11:12,400
This disconnect has led many
to question the ethics

227
00:11:12,400 --> 00:11:13,880
of the Vosoritide trial.

228
00:11:13,880 --> 00:11:16,640
Some in the short statured community
are going so far

229
00:11:16,640 --> 00:11:20,520
as accusing scientists of trying
to eradicate little people.

230
00:11:20,520 --> 00:11:22,720
Did you realise early on

231
00:11:22,720 --> 00:11:26,960
that the trial was controversial
amongst the little people community?

232
00:11:26,960 --> 00:11:28,480
- Not at the beginning.
- OK.

233
00:11:28,480 --> 00:11:31,080
But, you know, we've been
a part of it for a while now

234
00:11:31,080 --> 00:11:33,800
and I'm aware
of the controversy surrounding it.

235
00:11:33,800 --> 00:11:37,000
Do you understand why
there is controversy around it,
in that community?

236
00:11:37,000 --> 00:11:39,040
Yeah. Yeah, I believe I do.

237
00:11:43,720 --> 00:11:45,040
Right now, around the world,

238
00:11:45,040 --> 00:11:47,640
many adults with achondroplasia
are angered

239
00:11:47,640 --> 00:11:49,280
by the development of Vosoritide.

240
00:11:49,280 --> 00:11:52,720
And the strongest opposition
is in the United States,

241
00:11:52,720 --> 00:11:56,120
where an estimated 30,000 people
have a form of dwarfism.

242
00:11:56,120 --> 00:11:58,480
WOMAN: I'm fearful
of the drug Vosoritide.

243
00:11:58,480 --> 00:12:02,360
I think it could lead
to a lot more bad than good.

244
00:12:02,360 --> 00:12:04,160
MAN: So, do you want to go get
some food from the store?

245
00:12:04,160 --> 00:12:05,840
And then we'll make lunch here?

246
00:12:05,840 --> 00:12:07,560
- Sounds good.
- Alright.

247
00:12:07,560 --> 00:12:10,760
Becky, a motivational speaker,
and her husband Ryan

248
00:12:10,760 --> 00:12:13,080
belong to Little People of America,

249
00:12:13,080 --> 00:12:15,960
a support organisation
for short statured people.

250
00:12:17,160 --> 00:12:19,280
Should I wear my Packers hat
or my Patriots hat?

251
00:12:19,280 --> 00:12:22,360
Oh, man. I think the Packers
may match the green.

252
00:12:22,360 --> 00:12:24,160
Perfect.

253
00:12:24,160 --> 00:12:27,880
The organisation does not endorse
the use of Vosoritide.

254
00:12:27,880 --> 00:12:30,720
As a little person
I'm super passionate about this space

255
00:12:30,720 --> 00:12:34,760
because I just don't think
it matters what your height is.

256
00:12:34,760 --> 00:12:38,040
We just want a chance to participate
in a meaningful way in society.

257
00:12:39,560 --> 00:12:41,840
- We got good weather today, Becky.
- Gorgeous.

258
00:12:41,840 --> 00:12:43,800
Just like Casper back in Melbourne,

259
00:12:43,800 --> 00:12:47,080
Becky and Ryan
were born to average height parents

260
00:12:47,080 --> 00:12:48,840
and into average height families.

261
00:12:48,840 --> 00:12:51,440
Becky and Ryan both attended
regular high school,

262
00:12:51,440 --> 00:12:52,480
graduated college

263
00:12:52,480 --> 00:12:55,560
and until recently, Becky worked
as a casting agent in Hollywood.

264
00:12:55,560 --> 00:12:56,760
You look like a Christmas tree.

265
00:12:56,760 --> 00:12:58,400
BECKY: (LAUGHS)

266
00:12:58,400 --> 00:12:59,840
True.

267
00:12:59,840 --> 00:13:01,160
MARC: Apart from their height,

268
00:13:01,160 --> 00:13:04,120
there's nothing much
that distinguishes them

269
00:13:04,120 --> 00:13:05,400
from your average American.

270
00:13:05,400 --> 00:13:08,840
BECKY: There is kind of a stigma
I think

271
00:13:08,840 --> 00:13:10,960
that we can't do this,
we can't do that.

272
00:13:10,960 --> 00:13:14,400
But I think we just find ways
to figure it out.

273
00:13:14,400 --> 00:13:15,920
MARC: In terms of day-to-day living

274
00:13:15,920 --> 00:13:18,560
that can be as easy
as asking for the odd hand.

275
00:13:18,560 --> 00:13:21,840
Excuse me. Do you mind helping us
reach the tartar sauce?

276
00:13:21,840 --> 00:13:23,520
- Thank you so much.
- OK.

277
00:13:23,520 --> 00:13:24,720
Yeah, just the fat free.

278
00:13:24,720 --> 00:13:26,800
- This one?
- Yep. Thank you.
- Thank you very much.

279
00:13:28,160 --> 00:13:30,080
MARC: Making simple modifications...

280
00:13:30,080 --> 00:13:32,240
They think you just
have to be tall to drive.

281
00:13:32,240 --> 00:13:34,920
I have a little accessory
called pedal extensions

282
00:13:34,920 --> 00:13:36,800
that pushes the original pedal.

283
00:13:36,800 --> 00:13:40,360
..or occasionally shopping
in the children's section.

284
00:13:40,360 --> 00:13:42,360
- Actually it is kind of nice.
- Yeah.

285
00:13:42,360 --> 00:13:43,760
I do kind of want it.

286
00:13:45,240 --> 00:13:48,560
MARC: The way Becky sees it,
there just aren't enough situations

287
00:13:48,560 --> 00:13:51,760
that require little people
to change physically,

288
00:13:51,760 --> 00:13:54,680
a fact that she says
empowers their community.

289
00:13:54,680 --> 00:13:56,920
BECKY: I don't think
me being a foot taller

290
00:13:56,920 --> 00:13:59,800
would add any additional value
to my life.

291
00:13:59,800 --> 00:14:04,640
I'm who I am and I think the level
of pride just continues to increase

292
00:14:04,640 --> 00:14:08,440
the more bias and stigmas
that come our way.

293
00:14:08,440 --> 00:14:12,120
And, yes, there are so many
challenges that I've had to face

294
00:14:12,120 --> 00:14:13,800
to get to where I am today,

295
00:14:13,800 --> 00:14:17,920
but I think it just makes us stronger
and it adds more to our characters.

296
00:14:17,920 --> 00:14:20,400
- Do it in the oven?
- Yeah.

297
00:14:20,400 --> 00:14:24,520
People often ask me,
if I could wave a magic wand

298
00:14:24,520 --> 00:14:28,080
would I choose to be
a little person in my next life.

299
00:14:28,080 --> 00:14:31,520
And I always respond by saying yes.

300
00:14:31,520 --> 00:14:34,640
But I would change the way
the outside world reacts to me

301
00:14:34,640 --> 00:14:36,840
being a little person.

302
00:14:36,840 --> 00:14:39,080
The first cocksucker
to nail a bullseye...

303
00:14:39,080 --> 00:14:40,080
(CHEERING)

304
00:14:41,400 --> 00:14:44,440
MARC: According to Becky, the biggest
challenge facing little people

305
00:14:44,440 --> 00:14:47,040
is the prejudice
of the average height world.

306
00:14:47,040 --> 00:14:52,120
CROWD: One, two, three...

307
00:14:52,120 --> 00:14:55,480
That happened to me
when I was living in Los Angeles,

308
00:14:55,480 --> 00:14:57,040
where someone tried to pick me up

309
00:14:57,040 --> 00:14:59,800
and I ended up hitting my head
on the cement.

310
00:15:01,000 --> 00:15:04,480
People assume that it's socially
acceptable to pick us up

311
00:15:04,480 --> 00:15:06,880
and throw us across a room.

312
00:15:06,880 --> 00:15:11,120
People look at people
with dwarfism as non-humans.

313
00:15:12,200 --> 00:15:15,840
MARC: Becky and many others feel
there's a simple explanation

314
00:15:15,840 --> 00:15:17,280
for these attitudes.

315
00:15:17,280 --> 00:15:20,480
# We represent the lollipop guild

316
00:15:20,480 --> 00:15:22,240
# The lollipop guild

317
00:15:22,240 --> 00:15:23,840
# The lollipop guild. #

318
00:15:23,840 --> 00:15:26,640
BECKY: Historically,
people with dwarfism

319
00:15:26,640 --> 00:15:29,640
have been portrayed negatively
in the media

320
00:15:29,640 --> 00:15:32,800
as elves and leprechauns.

321
00:15:32,800 --> 00:15:37,000
And it just affects how each of us
are treated in everyday life.

322
00:15:37,000 --> 00:15:39,560
MARC: Films like The Wizard of Oz,
Willy Wonka,

323
00:15:39,560 --> 00:15:43,320
The Wolf of Wall Street, and Austin
Powers, are often criticised

324
00:15:43,320 --> 00:15:45,320
for their harmful depictions
of dwarfism.

325
00:15:48,320 --> 00:15:51,160
Many also argue
that these negative portrayals

326
00:15:51,160 --> 00:15:54,520
lead parents to enrol children
in trials for drugs like Vosoritide.

327
00:15:56,560 --> 00:15:58,000
Down, Mini Me.

328
00:15:58,000 --> 00:16:01,880
..O Lord, these gifts
which we are about to receive...

329
00:16:01,880 --> 00:16:04,920
MARC: Becky fears the consequences
for her people.

330
00:16:04,920 --> 00:16:07,680
..through Christ our Lord. Amen.

331
00:16:07,680 --> 00:16:11,640
MARC: If this drug is approved
and does become popular,

332
00:16:11,640 --> 00:16:14,560
what do you think
will happen to that community?

333
00:16:14,560 --> 00:16:16,800
I hate to say this,
but I'm almost glad

334
00:16:16,800 --> 00:16:20,040
that I may not be alive
during that time,

335
00:16:20,040 --> 00:16:24,280
because there may be no community
if it becomes so popular.

336
00:16:24,280 --> 00:16:29,080
So, when people say terms
like 'genocide' and 'elimination',

337
00:16:29,080 --> 00:16:30,080
it's accurate.

338
00:16:30,080 --> 00:16:32,320
Absolutely.

339
00:16:32,320 --> 00:16:34,400
People are talking about

340
00:16:34,400 --> 00:16:38,640
how it's not meant
to make our population extinct,

341
00:16:38,640 --> 00:16:44,400
but it's meant to take away the
painful parts of what we go through.

342
00:16:44,400 --> 00:16:47,960
I feel that you can't have
one or the other.

343
00:16:47,960 --> 00:16:51,040
Like, it's so much a part of...

344
00:16:51,040 --> 00:16:54,480
..our build and who we are and,
like, if you're taking a drug

345
00:16:54,480 --> 00:16:56,480
to then eliminate the painful parts,

346
00:16:56,480 --> 00:16:59,960
but still keeping
the character traits,

347
00:16:59,960 --> 00:17:02,000
I don't know if you can have both.

348
00:17:02,000 --> 00:17:05,000
Becky, Vosoritide
is being given to babies

349
00:17:05,000 --> 00:17:09,240
who really have no agency
in this process at all.

350
00:17:09,240 --> 00:17:11,760
What do you think of that?

351
00:17:11,760 --> 00:17:14,200
If it was my baby,
I wouldn't do it.

352
00:17:14,200 --> 00:17:17,040
I think a lot of average height
parents are fearful

353
00:17:17,040 --> 00:17:19,200
because they don't have
enough evidence

354
00:17:19,200 --> 00:17:21,840
about what the future can be like
for their child.

355
00:17:21,840 --> 00:17:28,120
This is who we are and we can be
fully capable and independent

356
00:17:28,120 --> 00:17:30,440
just as who we are.

357
00:17:30,440 --> 00:17:32,520
And, yes, there may be
some medical procedures

358
00:17:32,520 --> 00:17:34,320
that come up along the way

359
00:17:34,320 --> 00:17:35,960
but it would just be so nice

360
00:17:35,960 --> 00:17:39,680
if people didn't just think
that we needed to be fixed

361
00:17:39,680 --> 00:17:41,320
and embraced who we were.

362
00:17:42,960 --> 00:17:46,080
In the US, this trial has faced
pretty significant opposition

363
00:17:46,080 --> 00:17:47,440
from certain quarters.

364
00:17:47,440 --> 00:17:49,120
Why do you think that is?

365
00:17:49,120 --> 00:17:52,880
There's a big belief
that this medication will inherently

366
00:17:52,880 --> 00:17:56,520
take away the identity
of those people being treated.

367
00:17:56,520 --> 00:17:58,880
It's no more
changing their identity

368
00:17:58,880 --> 00:18:01,120
than if they have pneumonia
and I treat them with penicillin.

369
00:18:01,120 --> 00:18:05,480
If you've got a community that
their bonds are built on height

370
00:18:05,480 --> 00:18:07,880
some of that fear
must be well founded, though.

371
00:18:07,880 --> 00:18:09,760
Whenever something new comes out
it's controversial.

372
00:18:09,760 --> 00:18:12,920
When the treatment for leukaemia
came out in the '40s and '50s,

373
00:18:12,920 --> 00:18:15,960
people said it's unethical
to treat children with leukaemia.

374
00:18:15,960 --> 00:18:17,360
And now we wouldn't think twice

375
00:18:17,360 --> 00:18:19,800
about our children
being treated for leukaemia

376
00:18:19,800 --> 00:18:22,240
because we have
almost 100% improvement rate.

377
00:18:22,240 --> 00:18:27,280
And I guess the other thing,
these treatments are not compulsory.

378
00:18:27,280 --> 00:18:29,720
What they are,
is an option for families.

379
00:18:29,720 --> 00:18:33,960
And when families hear about
this option, almost always,

380
00:18:33,960 --> 00:18:36,760
they want an option that might
improve the health of their child.

381
00:18:37,920 --> 00:18:41,040
But in the end, we're not trying
to change anyone's identity,

382
00:18:41,040 --> 00:18:43,800
we're trying to keep children
healthy.

383
00:18:43,800 --> 00:18:47,320
Becky, what would you like
those parents to know,

384
00:18:47,320 --> 00:18:50,160
to be thinking about
as they make those choices?

385
00:18:50,160 --> 00:18:54,480
What is it that you're trying
to run away from or hide from?

386
00:18:54,480 --> 00:18:57,040
And what do you think this can fix?

387
00:18:57,040 --> 00:18:58,960
Your child can be anything,

388
00:18:58,960 --> 00:19:01,520
give them the chance
to spread their wings

389
00:19:01,520 --> 00:19:03,960
and be the best versions
of themselves.

390
00:19:03,960 --> 00:19:08,440
And don't let your doubts
or limitations get in their way.

391
00:19:14,600 --> 00:19:17,320
Although Vosoritide
is on the cutting edge,

392
00:19:17,320 --> 00:19:20,320
it's not the only time
science has tried to help people

393
00:19:20,320 --> 00:19:23,120
overcome the physical limitations
of dwarfism.

394
00:19:23,120 --> 00:19:25,640
I wish they would
let you try clothes on.

395
00:19:25,640 --> 00:19:27,360
It's just the little things in life

396
00:19:27,360 --> 00:19:30,160
like being able
to pick a pair of pants at the store

397
00:19:30,160 --> 00:19:33,360
try them on and have them fit.

398
00:19:33,360 --> 00:19:36,600
27-year-old Chandler
was born with achondroplasia.

399
00:19:36,600 --> 00:19:40,240
Her parents are average height
so are her brother and sister.

400
00:19:40,240 --> 00:19:41,400
Actually really nice.

401
00:19:41,400 --> 00:19:43,000
But when she was a teenager,

402
00:19:43,000 --> 00:19:46,760
she chose to undergo a surgical
procedure called 'limb lengthening'.

403
00:19:46,760 --> 00:19:50,120
CHANDLER: Limb lengthening involves
the cutting of the bone.

404
00:19:50,120 --> 00:19:54,360
And they put screws or rods
in your legs or arms

405
00:19:54,360 --> 00:19:58,800
and pull the bone apart
to let new bone form,

406
00:19:58,800 --> 00:20:01,800
which makes you achieve more height.

407
00:20:01,800 --> 00:20:05,680
So, this was probably
the highest shelf I could reach

408
00:20:05,680 --> 00:20:07,760
before any of my lengthenings.

409
00:20:07,760 --> 00:20:13,360
But, you know, now I can just
grab a jar of sauce

410
00:20:13,360 --> 00:20:15,880
off of a shelf like that.

411
00:20:17,160 --> 00:20:18,760
Chandler is now 4 foot 11.

412
00:20:18,760 --> 00:20:22,960
That's over 30cm taller than
she was expected to grow naturally.

413
00:20:22,960 --> 00:20:27,560
Now, I'm able to just get in a car

414
00:20:27,560 --> 00:20:31,680
drive, and not have to worry about
pedal or hand adaptations.

415
00:20:31,680 --> 00:20:34,080
I mean, it just gives me

416
00:20:34,080 --> 00:20:35,960
another sense of independence.

417
00:20:39,080 --> 00:20:41,320
Chandler had her first lengthening
at 16,

418
00:20:41,320 --> 00:20:43,760
a few years after
seeing this home video.

419
00:20:45,200 --> 00:20:48,000
To gain her extra height
she had three procedures,

420
00:20:48,000 --> 00:20:51,560
each taking between
six and eight months to complete.

421
00:20:51,560 --> 00:20:55,040
Oh, yeah. I forgot.
You wanted to watch.

422
00:20:55,040 --> 00:20:57,080
And, being a good millennial,

423
00:20:57,080 --> 00:21:00,080
she documented all of it
on social media.

424
00:21:01,160 --> 00:21:05,800
I always heard opinions from people
with dwarfism about lengthening

425
00:21:05,800 --> 00:21:10,440
that, it was very excruciating
and you're bedridden

426
00:21:10,440 --> 00:21:14,040
and you're just doing all of this
just to be taller.

427
00:21:14,040 --> 00:21:17,040
And that's not it at all.

428
00:21:18,040 --> 00:21:23,760
This was, like, my
'I'm going to wear eyeliner' phase.

429
00:21:23,760 --> 00:21:26,560
Chandler now works
as a patient advocate,

430
00:21:26,560 --> 00:21:28,880
helping families understand
the medical treatments available

431
00:21:28,880 --> 00:21:31,040
to children with dwarfism.

432
00:21:31,040 --> 00:21:33,960
But the reaction
from the short statured community

433
00:21:33,960 --> 00:21:36,200
hasn't always been good.

434
00:21:36,200 --> 00:21:39,360
Chandler, when you decided
to get limb lengthening,

435
00:21:39,360 --> 00:21:40,960
what were you hoping for?

436
00:21:40,960 --> 00:21:42,680
What did you hope it would achieve?

437
00:21:42,680 --> 00:21:45,960
The first thing in my mind
that I was hoping for

438
00:21:45,960 --> 00:21:48,480
was that I would look
like everybody else.

439
00:21:48,480 --> 00:21:51,200
It wasn't really
a matter of my height.

440
00:21:51,200 --> 00:21:57,120
It was more of a matter of I wanted
my arms and legs to be proportionate

441
00:21:57,120 --> 00:22:01,040
Because, you know,
I just... I wanted to look normal.

442
00:22:02,560 --> 00:22:06,480
You've been pretty up-front
talking about this experience.

443
00:22:06,480 --> 00:22:09,720
Have you had any pushback
from the rest of the community?

444
00:22:09,720 --> 00:22:12,920
I have received feedback
from those in the dwarfism community

445
00:22:12,920 --> 00:22:16,840
who would private message me

446
00:22:16,840 --> 00:22:19,360
and tell me
that my family never loved me

447
00:22:19,360 --> 00:22:20,640
and never accepted me.

448
00:22:24,360 --> 00:22:25,720
I'm going to cry.

449
00:22:25,720 --> 00:22:28,200
They told my mum,
"Your child is not one of you.

450
00:22:28,200 --> 00:22:29,760
"She is one of us."

451
00:22:30,960 --> 00:22:34,720
And there are days
when those words do get to me,

452
00:22:34,720 --> 00:22:36,440
but at the end of it,

453
00:22:36,440 --> 00:22:41,000
why does the choice that I made
for myself affect you?

454
00:22:41,000 --> 00:22:44,440
If a drug like Vosoritide
had been available to you

455
00:22:44,440 --> 00:22:47,040
and you had had the choice
when you were younger,

456
00:22:47,040 --> 00:22:49,240
do you think it's something
you would have taken up?

457
00:22:49,240 --> 00:22:52,680
I know had I had an option
like Vosoritide,

458
00:22:52,680 --> 00:22:57,680
it is something that in a heartbeat
I would have wanted to be on

459
00:22:57,680 --> 00:23:01,440
Vosoritide, it treats and prevents

460
00:23:01,440 --> 00:23:05,400
a lot of the risks and complications

461
00:23:05,400 --> 00:23:08,360
that come with having achondroplasia,

462
00:23:08,360 --> 00:23:11,880
but Achondroplasia itself
will not go away.

463
00:23:25,280 --> 00:23:28,240
READS: "We'll gather supplies
and make them our own

464
00:23:28,240 --> 00:23:32,680
"and prepare to take flight
into the great unknown."

465
00:23:32,680 --> 00:23:36,200
MARC: Back in Melbourne, now
17-month-old Casper and his family

466
00:23:36,200 --> 00:23:39,200
continue to be part
of the global trial for Vosoritide,

467
00:23:39,200 --> 00:23:43,440
a controversial drug which may help
children with dwarfism grow tall.

468
00:23:43,440 --> 00:23:46,440
"You're one of a kind
and it's so clear to see

469
00:23:46,440 --> 00:23:49,840
"the world needs
who you were made to be."

470
00:23:51,640 --> 00:23:53,920
I first met the family
three months ago.

471
00:23:53,920 --> 00:23:56,440
And since then,
parents Daisy and Justin

472
00:23:56,440 --> 00:24:02,040
have given their son around 84 shots,
of either Vosoritide

473
00:24:02,040 --> 00:24:03,720
or a placebo.

474
00:24:05,280 --> 00:24:07,560
Shoosh, it's alright, darling.

475
00:24:07,560 --> 00:24:09,080
And while they don't know

476
00:24:09,080 --> 00:24:12,760
if Casper has already been receiving
the active drug,

477
00:24:12,760 --> 00:24:16,280
there have been some big changes
for this little man.

478
00:24:18,240 --> 00:24:19,800
Stand for Mum.

479
00:24:21,080 --> 00:24:22,360
Good boy.

480
00:24:23,560 --> 00:24:26,280
We're very excited
because Casper's just started

481
00:24:26,280 --> 00:24:28,840
to pull himself up and stand.

482
00:24:28,840 --> 00:24:32,600
Watching Casper grow and develop
is amazing.

483
00:24:32,600 --> 00:24:35,160
And fills me with that warm,
sort of sense of pride.

484
00:24:35,160 --> 00:24:37,760
It's just immensely rewarding.

485
00:24:37,760 --> 00:24:39,320
It's not the only change.

486
00:24:39,320 --> 00:24:41,320
- Hello.
- How are you, Daisy?

487
00:24:41,320 --> 00:24:43,200
I'm well. How are you?
- Good to see you.
- Likewise.

488
00:24:43,200 --> 00:24:45,800
It's been a year
since Casper joined the trial,

489
00:24:45,800 --> 00:24:49,560
and after a series of tests,
Dr Ravi has some news.

490
00:24:49,560 --> 00:24:52,600
We're going to be consenting you
into the next part of the study,

491
00:24:52,600 --> 00:24:55,080
which is
the long-term extension part,

492
00:24:55,080 --> 00:24:58,520
which means he's 100% sure
to be getting the active drug.

493
00:24:58,520 --> 00:25:02,440
And that medication potentially,
he'll be on till he finishes growing.

494
00:25:02,440 --> 00:25:04,000
So, for the next 18 years.

495
00:25:04,000 --> 00:25:06,720
So it's very exciting. Thanks for
hanging in there for the whole year.

496
00:25:06,720 --> 00:25:08,120
No. Thank you.

497
00:25:08,120 --> 00:25:09,280
So, how are you feeling?

498
00:25:09,280 --> 00:25:10,880
Yeah. I'm excited.

499
00:25:10,880 --> 00:25:12,720
I'm really excited to be a part.

500
00:25:12,720 --> 00:25:16,160
So, I'll just get you
to write his name there.

501
00:25:16,160 --> 00:25:18,000
That's you.

502
00:25:19,440 --> 00:25:21,320
And your signature there.

503
00:25:21,320 --> 00:25:23,720
Welcome to the next part
of his journey.

504
00:25:23,720 --> 00:25:25,880
Thank you. Thank you.
- Very exiting.

505
00:25:25,880 --> 00:25:27,320
Thumbs up, Casper.

506
00:25:27,320 --> 00:25:28,560
The condition that Casper has

507
00:25:28,560 --> 00:25:31,400
means that he has a much higher
incidence of medical complications

508
00:25:31,400 --> 00:25:33,360
functional limitations
and other issues.

509
00:25:33,360 --> 00:25:35,040
And I just want to remove
all of those

510
00:25:35,040 --> 00:25:40,640
so that he can live a life
without any of the consequences
of his medical condition.

511
00:25:40,640 --> 00:25:42,480
- He's very proud of himself.
- He's so proud of himself.

512
00:25:42,480 --> 00:25:44,640
He's just given me a massive
'How good am I?'

513
00:25:44,640 --> 00:25:45,920
He thinks he's doing an amazing job.

514
00:25:45,920 --> 00:25:47,680
He's just given me
a massive 'How good am I?' smile.

515
00:25:47,680 --> 00:25:49,640
I think it's what we all want
for our children.

516
00:25:49,640 --> 00:25:50,960
So, pretty simple.

517
00:25:50,960 --> 00:25:53,200
And if this trial and this medication
can be part of that,

518
00:25:53,200 --> 00:25:55,320
I think it's a great option
for families.

519
00:25:57,920 --> 00:26:00,040
But behind all the excitement

520
00:26:00,040 --> 00:26:04,320
is the reality that Casper is a boy
growing up between two worlds.

521
00:26:04,320 --> 00:26:07,120
- Froggie goes ribbet.
- Ribbet. Ribbet

522
00:26:07,120 --> 00:26:08,480
Ribbet.

523
00:26:08,480 --> 00:26:10,920
For Daisy, it's important
for her son to know

524
00:26:10,920 --> 00:26:14,520
that whoever he becomes,
he won't be alone.

525
00:26:14,520 --> 00:26:15,920
- Ta.
- Ta.

526
00:26:19,360 --> 00:26:23,720
Today, Casper's meeting members of
Short Statured People of Australia.

527
00:26:23,720 --> 00:26:26,640
He has four words and I'm very upset
that 'Mum' is not one of them.

528
00:26:26,640 --> 00:26:28,800
(LAUGHTER)

529
00:26:28,800 --> 00:26:31,360
MAN: We're actually
a support organisation

530
00:26:31,360 --> 00:26:34,480
for people with dwarfism
and their families.

531
00:26:34,480 --> 00:26:36,600
But we're also trying to provide
an opportunity

532
00:26:36,600 --> 00:26:40,200
for people to meet people
with similar conditions to themselves

533
00:26:40,200 --> 00:26:42,280
and be around people
that are like them.

534
00:26:42,280 --> 00:26:44,520
Maybe you can teach Casper one day.

535
00:26:44,520 --> 00:26:46,240
MARC: For Casper, today is a chance

536
00:26:46,240 --> 00:26:49,720
to play with other short statured
kids like 4-year-old Sienna.

537
00:26:49,720 --> 00:26:52,560
I just told Casper I love him.

538
00:26:52,560 --> 00:26:55,120
Aww... That's beautiful.

539
00:26:55,120 --> 00:26:57,560
For Daisy and Justin
it's a place to get answers

540
00:26:57,560 --> 00:26:59,240
they won't find anywhere else.

541
00:26:59,240 --> 00:27:03,760
It was a whole new world
parenting a child with short stature

542
00:27:03,760 --> 00:27:05,840
as opposed to being
short statured myself.

543
00:27:05,840 --> 00:27:08,840
I'm still learning about
the questions I need to ask

544
00:27:08,840 --> 00:27:12,680
and the things I need look out for
and do for her.

545
00:27:12,680 --> 00:27:15,280
But if Casper does outgrow
this group,

546
00:27:15,280 --> 00:27:17,400
will he still have a place in it?

547
00:27:17,400 --> 00:27:21,000
The drug trial has kind of been
a journey I suppose,

548
00:27:21,000 --> 00:27:22,160
for the organisation.

549
00:27:22,160 --> 00:27:26,560
We want people to know that
whether they want to be part of it

550
00:27:26,560 --> 00:27:28,400
or don't want to be part of it,

551
00:27:28,400 --> 00:27:30,920
they're welcome in our organisation.

552
00:27:30,920 --> 00:27:34,720
And being part of the community
has nothing to do with height.

553
00:27:34,720 --> 00:27:36,320
It has to do with the condition

554
00:27:36,320 --> 00:27:39,360
and has to do
with identifying with your peers.

555
00:27:42,000 --> 00:27:45,240
MARC: Vosoritide has now been
approved for use in Australia.

556
00:27:46,640 --> 00:27:49,000
Even if it can treat achondroplasia,

557
00:27:49,000 --> 00:27:52,120
the effect on the world's
short-statured community,

558
00:27:52,120 --> 00:27:54,280
that won't be known
for quite some time.

559
00:27:54,280 --> 00:27:58,520
And the question of whether kids
like Casper should grow tall

560
00:27:58,520 --> 00:28:00,920
will face families
for years to come.

561
00:28:00,920 --> 00:28:06,080
CHANDLER: I always say just let
everyone make their own decision

562
00:28:06,080 --> 00:28:08,760
and it's always best
to just be educated

563
00:28:08,760 --> 00:28:10,440
and to know what's out there.

564
00:28:11,800 --> 00:28:13,600
BECKY: I wouldn't do it.

565
00:28:13,600 --> 00:28:14,960
But at the end of the day

566
00:28:14,960 --> 00:28:18,440
they're still a human being and they
want to be loved and accepted.

567
00:28:18,440 --> 00:28:21,640
I would welcome them with open arms.

568
00:28:23,120 --> 00:28:25,640
DAISY: I would just hope
that others would respect

569
00:28:25,640 --> 00:28:29,440
that our intentions were pure
and we did the best we could.

570
00:28:29,440 --> 00:28:32,160
And we did what we thought
was the right thing.

571
00:28:32,160 --> 00:28:33,840
It came from love.

572
00:28:33,840 --> 00:28:35,840
Yeah. Yeah. Absolutely.

573
00:28:35,840 --> 00:28:39,080
For us,
Casper is just a normal child.

574
00:28:39,080 --> 00:28:41,640
He's no different
to any other child, really.

575
00:28:50,440 --> 00:28:52,040
VOICEOVER: Next week on Dateline,

576
00:28:52,040 --> 00:28:53,760
as country's rally for the World Cup

577
00:28:53,760 --> 00:28:58,760
we uncover football's struggle
to shake its racist reputation.

578
00:28:58,760 --> 00:29:00,960
Captions by Red Bee Media
(c) SBS Australia 2022