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1
00:02:22,099 --> 00:02:25,439
- One orange.
- (class) One orange.
2
00:02:25,561 --> 00:02:28,811
- Chungwa moja.
- (class) Chungwa moja.
3
00:02:28,939 --> 00:02:32,109
- Two oranges.
- Two oranges.
4
00:02:32,234 --> 00:02:35,994
- Machungwa mawili.
- Machungwa mawili.
5
00:02:36,113 --> 00:02:39,783
- One pineapple.
- One pineapple.
6
00:04:13,794 --> 00:04:15,844
(Lorenzo) Omouri! Omouri!
7
00:05:23,906 --> 00:05:26,736
Here he is,
the cleverest boy in the world.
8
00:05:29,536 --> 00:05:31,496
- Hi, Mom.
- What's this?
9
00:05:31,622 --> 00:05:34,082
- It's a picture.
- Oh, my goodness.
10
00:05:34,208 --> 00:05:36,998
- And there's the Comoros.
- Of course it is.
11
00:05:37,169 --> 00:05:40,379
- Mrs Odone, may I have a word?
- Very skilful, sweetheart.
12
00:05:40,506 --> 00:05:43,336
- And Jupiter.
- Jupiter next to the Comoros?
13
00:05:43,467 --> 00:05:46,677
- I'll be right there, Lorenzo.
- OK, Mommy.
14
00:05:46,804 --> 00:05:50,724
- Is Lorenzo having problems at home?
- Not that I know of. Why?
15
00:05:50,849 --> 00:05:55,769
Today he started throwing paints around.
He went wild, destroying other paintings.
16
00:05:55,896 --> 00:05:59,146
- He must have been provoked.
- No, it came out of the blue.
17
00:05:59,274 --> 00:06:01,744
He's normally such a terrific kid.
18
00:06:06,281 --> 00:06:09,031
- Darling, were they teasing you?
- No.
19
00:06:09,159 --> 00:06:11,749
- Were they touching your paints?
- No.
20
00:06:11,870 --> 00:06:14,330
- How were they annoying you?
- They just were.
21
00:06:14,456 --> 00:06:16,206
- Doing what?
- Things.
22
00:06:16,333 --> 00:06:20,553
- What kind of things?
- Things that make me feel annoyed.
23
00:06:20,671 --> 00:06:22,721
(bell rings)
24
00:06:27,386 --> 00:06:28,756
- Mrs Odone...
- Another incident?
25
00:06:28,971 --> 00:06:31,851
Yes, and today it was much worse.
26
00:06:31,974 --> 00:06:35,484
Mrs Odone, is there
some trouble at home?
27
00:06:35,602 --> 00:06:37,652
Why do you assume
the trouble's at home?
28
00:06:37,771 --> 00:06:43,441
Because there's nothing here that
explains his behaviour. It's... disturbed.
29
00:06:43,569 --> 00:06:45,609
(¶ Italian opera on radio)
30
00:06:53,454 --> 00:06:55,504
(Lorenzo screaming indoors)
31
00:07:10,137 --> 00:07:12,467
He does present as a hyperactive.
32
00:07:12,598 --> 00:07:16,938
- But don't they repeat tasks endlessly?
- They perseverate, yes.
33
00:07:17,061 --> 00:07:20,941
Lorenzo's activities all have a structure:
beginning, middle and end.
34
00:07:21,065 --> 00:07:25,145
My gosh, he's learned three languages.
How could he be hyperactive?
35
00:07:26,236 --> 00:07:29,906
I know it's hard to accept that
a gifted child may also be disturbed.
36
00:07:30,032 --> 00:07:33,162
(woman) Lorenzo needs to be
referred to an IDP committee.
37
00:07:33,285 --> 00:07:35,115
- What's that?
- For what?
38
00:07:35,287 --> 00:07:38,037
Individual Disability Placement.
39
00:07:38,207 --> 00:07:41,627
Lorenzo needs to be
in a special ed class.
40
00:07:41,752 --> 00:07:45,712
Any special ed our son needs
will be provided at home.
41
00:07:45,839 --> 00:07:49,719
Anyhow, it was snowing and he began
to rub my hands to warm them.
42
00:07:49,843 --> 00:07:50,393
Uh-oh.
43
00:07:50,552 --> 00:07:53,432
No, he then produced photos
of his wife and children.
44
00:07:53,597 --> 00:07:56,427
- That old routine!
- Oh, Deirdre!
45
00:07:56,600 --> 00:07:59,440
Had I known this was the man
I would wait ten years for,...
46
00:07:59,561 --> 00:08:02,191
- ..I'd have let you pick up the cheque.
- I did.
47
00:08:02,314 --> 00:08:04,364
Excuse me! You did not!
48
00:08:04,483 --> 00:08:06,533
(guests continue chattering)
49
00:08:22,459 --> 00:08:26,509
Lorenzo's fallen off his bike
and he is really bleeding.
50
00:08:26,630 --> 00:08:29,470
Sh. That's a boy.
51
00:08:29,591 --> 00:08:32,091
Oh, such a brave boy.
52
00:08:32,261 --> 00:08:34,301
Doing just fine, here.
53
00:08:34,430 --> 00:08:37,100
(Mr Odone) You're going to be OK.
54
00:08:37,266 --> 00:08:39,176
It's Christmas Day, you know.
55
00:08:39,268 --> 00:08:43,648
All across the country
little boys are trying out their new bikes.
56
00:08:45,315 --> 00:08:49,235
Hey, champ. I think you'd better
tell your folks to lighten up.
57
00:08:49,361 --> 00:08:52,491
What are they gonna do when
you're playing for the Redskins?
58
00:09:34,948 --> 00:09:40,538
The EEG is normal, the skull x-ray
is normal and the CT scan is normal.
59
00:09:40,662 --> 00:09:44,212
I don't know what to tell you.
This boy is neurologically intact.
60
00:09:44,333 --> 00:09:47,343
Doctor, we spent
three years in East Africa.
61
00:09:47,461 --> 00:09:50,051
- In the Comoros.
- We were wondering...
62
00:09:50,172 --> 00:09:53,552
Well, if he might have
picked up some rare parasite.
63
00:09:54,426 --> 00:09:56,426
It's possible.
64
00:10:01,392 --> 00:10:03,442
(sudden loud classical music)
65
00:10:05,604 --> 00:10:07,654
Lorenzo, what are you doing?
66
00:10:09,316 --> 00:10:11,356
Lorenzo!
67
00:10:18,534 --> 00:10:22,504
Sweetie? Can you hear Mommy?
68
00:10:22,621 --> 00:10:26,171
This may be an auditory
processing difficulty.
69
00:10:26,333 --> 00:10:31,463
The ears hear all right,
but the brain has trouble listening.
70
00:10:31,588 --> 00:10:35,678
So, this means something
is affecting his brain.
71
00:10:35,801 --> 00:10:39,351
But what? A tumour? Multiple sclerosis?
72
00:10:39,513 --> 00:10:41,643
It could be any one of a dozen things.
73
00:10:52,317 --> 00:10:57,027
Listen, my friend. I'd like you to come
and stay in the hospital for three days.
74
00:10:57,156 --> 00:10:59,066
Your mom and dad can come too.
75
00:10:59,199 --> 00:11:02,239
We're gonna run some tests
and get to the bottom of this.
76
00:11:08,834 --> 00:11:10,884
Can you hear the sound?
77
00:11:11,378 --> 00:11:15,298
Keep your eyes right on that spot
for me. That helps me out.
78
00:11:16,675 --> 00:11:18,585
All right. Now close your eyes.
79
00:11:32,274 --> 00:11:35,784
Keep your eyes closed, buddy.
Stay nice and still.
80
00:11:51,502 --> 00:11:53,552
(choir singing hymn)
81
00:13:22,634 --> 00:13:27,184
Of course, Easter festivals
existed long before baby Jesus.
82
00:13:27,306 --> 00:13:30,386
In pagan times, they marked
the beginning of Spring.
83
00:13:30,559 --> 00:13:35,729
The egg tells us that the earth is going
to be reborn, just like a little baby chick.
84
00:13:35,856 --> 00:13:38,606
- I get it.
- Mrs Odone. Mr Odone.
85
00:13:39,026 --> 00:13:41,196
Dr Judalon is ready now.
86
00:13:41,320 --> 00:13:45,030
Hey, Lorenzo, would you like
to go feed the goldfish?
87
00:13:45,699 --> 00:13:47,789
It's all right, sweetheart. Go ahead.
88
00:13:47,951 --> 00:13:51,961
We'll be right back
in just a few minutes. Go ahead.
89
00:13:52,081 --> 00:13:54,121
This way, please.
90
00:14:00,339 --> 00:14:02,379
Please, have a seat.
91
00:14:05,678 --> 00:14:07,718
(air conditioning rattles)
92
00:14:15,771 --> 00:14:19,071
Well, we certainly don't need
that noise, do we?
93
00:14:27,449 --> 00:14:28,369
So...
94
00:14:28,867 --> 00:14:32,367
Please, Doctor, without equivocation.
95
00:14:35,624 --> 00:14:39,134
There is a family of diseases.
It's quite rare.
96
00:14:39,253 --> 00:14:41,633
The leukodystrophies.
97
00:14:41,755 --> 00:14:45,045
Lorenzo has one of them.
It's called ALD.
98
00:14:46,844 --> 00:14:51,934
ALD is an inborn error of metabolism
that causes a degeneration of the brain.
99
00:14:53,267 --> 00:14:57,897
It only affects males, usually
between the ages of five and ten.
100
00:14:58,772 --> 00:15:02,902
Its progress is relentless.
The end is inevitable.
101
00:15:04,111 --> 00:15:08,661
All boys with ALD die, usually
within two years of diagnosis.
102
00:15:18,417 --> 00:15:20,707
And there are no exceptions?
103
00:15:21,879 --> 00:15:23,919
I am so sorry.
104
00:15:26,091 --> 00:15:28,511
- Are you absolutely sure?
- Yes.
105
00:15:30,804 --> 00:15:33,104
Lorenzo shows the definitive sign:
106
00:15:33,223 --> 00:15:39,443
..an abnormally high level of fat in his
blood, certain long-chain saturated fats.
107
00:15:42,316 --> 00:15:44,146
Oh.
108
00:15:45,569 --> 00:15:47,399
Uh...
109
00:15:48,072 --> 00:15:51,582
These fats... destroy his brain?
110
00:15:53,911 --> 00:15:55,951
But how?
111
00:15:56,914 --> 00:15:59,924
There is an enzyme
that should metabolise these fats,...
112
00:16:00,042 --> 00:16:02,292
..but in ALD boys it's defective.
113
00:16:02,419 --> 00:16:08,299
So they collect in the nerve cells,
a little bit like a cluster on the arteries.
114
00:16:08,467 --> 00:16:12,387
And... in some way...
115
00:16:13,472 --> 00:16:16,482
..this liquefies
the white matter of the brain.
116
00:16:16,642 --> 00:16:20,312
"Some way liquefies"?
Could you be more specific?
117
00:16:20,437 --> 00:16:24,777
Well, to be honest, we're not
quite certain just how it works.
118
00:16:25,984 --> 00:16:28,454
- You know what myelin is?
- No.
119
00:16:29,405 --> 00:16:33,405
Myelin is the fatty... sheath
that insulates the nerves.
120
00:16:33,534 --> 00:16:36,914
It's a little bit like plastic
around electrical wires.
121
00:16:37,037 --> 00:16:40,577
Without it, the nerves
cannot conduct an impulse.
122
00:16:40,708 --> 00:16:45,838
What ALD does is strip away the myelin.
It corrodes it, if you like.
123
00:16:46,005 --> 00:16:50,755
This causes degeneration of the brain
and the body loses its functions.
124
00:16:56,890 --> 00:17:00,770
But surely someone, somewhere,
must be working on this, no?
125
00:17:00,894 --> 00:17:03,114
- We would go anywhere.
- Yes.
126
00:17:03,897 --> 00:17:06,777
Ten years ago the disease
hadn't even been identified.
127
00:17:06,900 --> 00:17:10,450
We're still trying to
understand just what it is.
128
00:17:16,660 --> 00:17:20,330
I would like to
offer you some hope, but...
129
00:17:22,833 --> 00:17:26,003
Then there's absolutely no treatment?
130
00:17:29,590 --> 00:17:32,510
Normally at this point
we try to be constructive.
131
00:17:32,634 --> 00:17:35,804
We try to focus on what can be done.
132
00:17:35,888 --> 00:17:37,968
But in this case...
133
00:18:38,826 --> 00:18:41,906
When we get home, can we read a story?
134
00:18:42,037 --> 00:18:44,037
Of course, my darling.
135
00:18:49,086 --> 00:18:51,756
Lorenzino, let's go home.
136
00:20:48,998 --> 00:20:51,038
(sobs)
137
00:21:24,033 --> 00:21:25,703
(phone rings)
138
00:21:25,826 --> 00:21:28,406
(woman) Mr Odone? I have
a Dr Judalon on line three.
139
00:21:28,537 --> 00:21:31,957
- Good. Put him through.
- They're waiting for you in the meeting.
140
00:21:32,082 --> 00:21:33,922
All right, thank you.
141
00:21:34,043 --> 00:21:35,343
- Hello?
- Augusto?
142
00:21:35,461 --> 00:21:38,011
I just got off the phone to Gus Nikolais,...
143
00:21:38,130 --> 00:21:41,550
..a professor of neurology at
the Institute of Childhood Diseases.
144
00:21:41,675 --> 00:21:48,135
If there is a so-called "world expert"
on the leukodystrophies, Nikolais is it.
145
00:21:48,265 --> 00:21:50,635
- Ah, good.
- I don't want to raise false hopes,...
146
00:21:50,768 --> 00:21:55,478
..but he's working on
an experimental protocol based on a diet.
147
00:21:55,564 --> 00:21:57,114
Wonderful.
148
00:21:57,816 --> 00:22:00,066
(Lorenzo breathes with difficulty)
149
00:22:10,579 --> 00:22:12,579
Peanut butter, red meat, cheese...
150
00:22:12,706 --> 00:22:16,416
Unpeeled fruit, spinach, olive oil...
But these are healthy foods.
151
00:22:16,543 --> 00:22:20,713
Yes, but they contain
very long-chain saturated fats.
152
00:22:21,507 --> 00:22:22,837
I...
153
00:22:22,966 --> 00:22:27,756
I still do not understand why
they are so harmful to Lorenzo.
154
00:22:27,888 --> 00:22:31,808
- Why are they so destructive?
- How can spinach make the difference?
155
00:22:31,934 --> 00:22:36,524
The human body needs these fats
in order to create cells,...
156
00:22:36,647 --> 00:22:40,477
..and the excess is burned off.
That's normally, of course.
157
00:22:40,609 --> 00:22:44,739
But in the case of an ALD boy,
these saturates can't be broken down...
158
00:22:44,863 --> 00:22:46,913
..and they build up in the brain.
159
00:22:47,032 --> 00:22:52,452
And somehow this build-up
strips the myelin covering.
160
00:22:52,621 --> 00:22:55,751
Yes, exactly. And, for the moment,
we don't know why this is.
161
00:22:55,874 --> 00:23:00,004
But we feel that, by withdrawing
the saturated fats from the diet,...
162
00:23:00,129 --> 00:23:02,589
..we will prevent them
accumulating in the brain.
163
00:23:02,798 --> 00:23:04,258
And if we could?
164
00:23:04,383 --> 00:23:07,343
There's no way to reverse
neurological damage.
165
00:23:07,469 --> 00:23:11,599
All we can hope for is
to slow the cascade of symptoms.
166
00:23:11,724 --> 00:23:14,984
But if it's any consolation to you,
you'll be helping us...
167
00:23:15,144 --> 00:23:19,484
..understand the biochemistry
of this heartless disease.
168
00:23:21,692 --> 00:23:25,282
So, can we enrol Lorenzo in our trial?
169
00:23:28,615 --> 00:23:30,655
I suppose so.
170
00:23:31,785 --> 00:23:36,575
Good. Then I will pass you
over to our dietician...
171
00:23:36,707 --> 00:23:41,497
..and meanwhile we should arrange
some genetic counselling.
172
00:23:41,628 --> 00:23:45,378
Oh, Dr Nikolais, it's highly unlikely
that we will have another child.
173
00:23:45,507 --> 00:23:48,837
No, but your sisters and their daughters
may all be carriers.
174
00:23:48,969 --> 00:23:52,429
- We need to test them.
- Only my family? What about his?
175
00:23:52,556 --> 00:23:57,056
No, no. ALD is passed
only through the mother.
176
00:23:58,187 --> 00:24:00,227
But I thought you understood all this.
177
00:24:02,775 --> 00:24:06,565
We knew it was inborn, but...
178
00:24:07,279 --> 00:24:10,739
..we assumed that meant
a combination of our genes.
179
00:24:10,866 --> 00:24:13,326
That's true in other inherited diseases,...
180
00:24:13,452 --> 00:24:15,952
..but ALD is only carried
on the female chromosome.
181
00:24:16,121 --> 00:24:18,121
Excuse me.
182
00:24:19,458 --> 00:24:22,668
Are you saying that Lorenzo
got this directly from me?
183
00:24:23,837 --> 00:24:28,297
Well, in the sense that
ALD is sex-linked, yes.
184
00:24:29,551 --> 00:24:31,801
It goes from mother to son.
185
00:24:33,389 --> 00:24:37,939
- And how did I get it?
- The woman gets it from her mother.
186
00:24:38,060 --> 00:24:41,400
And if I inherited the defect,
why don't I have the disease?
187
00:24:41,522 --> 00:24:45,032
No, the woman is only
the carrier, nothing else.
188
00:24:45,526 --> 00:24:50,906
But with each conception, she has
a 50-50 chance of passing on the defect.
189
00:24:51,031 --> 00:24:53,701
And when that happens...
190
00:24:53,867 --> 00:24:57,157
It's the cruellest kind of genetic lottery.
191
00:24:57,955 --> 00:24:59,785
- Lottery?
- Yes, a clumsy word.
192
00:24:59,957 --> 00:25:04,087
I use it because it's...
so arbitrary, you know.
193
00:25:04,211 --> 00:25:06,461
- No one is to blame.
- Um...
194
00:25:07,381 --> 00:25:10,431
If Michaela's mother had this,...
195
00:25:10,551 --> 00:25:12,971
..and her mother's mother,...
196
00:25:15,014 --> 00:25:17,064
..why was there no warning?
197
00:25:17,641 --> 00:25:21,061
Well, I suppose if you went back
into the family tree, you'd...
198
00:25:21,228 --> 00:25:26,608
But remember, a short time ago
this disease didn't even have a name.
199
00:25:27,985 --> 00:25:32,155
Mrs Odone, you have enough
to put up with without...
200
00:25:32,281 --> 00:25:34,741
You have nothing to blame yourself for.
201
00:25:38,704 --> 00:25:40,754
Thank you.
202
00:25:49,131 --> 00:25:50,671
(Deirdre) It's not a good idea.
203
00:25:50,758 --> 00:25:55,758
All right, so she doesn't want me. What
about Mother? She's packed and ready.
204
00:25:55,929 --> 00:25:59,099
Kenise, Michaela doesn't
want anybody around.
205
00:25:59,224 --> 00:26:01,564
What about Father Killian? He can come.
206
00:26:01,685 --> 00:26:03,975
Hell, no. She's not even
going to Mass now.
207
00:26:04,146 --> 00:26:07,146
- Deirdre, what is happening there?
- Just let it rest, OK?
208
00:26:07,274 --> 00:26:09,654
No. What will they do
for Lorenzo's birthday?
209
00:26:09,777 --> 00:26:12,107
- I'll call you. Bye.
- No. Deirdre!
210
00:26:13,238 --> 00:26:16,948
This is wrong. More than ever
she needs her family here.
211
00:26:17,076 --> 00:26:19,746
She doesn't want nobody.
She's too angry.
212
00:26:19,870 --> 00:26:22,000
We cannot afford the time to be angry.
213
00:26:22,122 --> 00:26:24,292
Come on, look what she's dealing with.
214
00:26:24,458 --> 00:26:26,498
She does not have to deal with it alone.
215
00:26:26,627 --> 00:26:31,797
She feels incredibly alone and unlucky,
like she's been singled out by God.
216
00:26:31,924 --> 00:26:35,014
- Oh, Deirdre!
- Yes! Kenise is a carrier with two girls.
217
00:26:35,135 --> 00:26:39,515
Me, a carrier with no kids at all, and
Mariah has a boy but she's not a carrier.
218
00:26:39,640 --> 00:26:41,810
So only Michaela gets this laid on her.
219
00:26:41,934 --> 00:26:47,234
- This did not happen only to Michaela.
- Sure. You got two kids already, Odone.
220
00:26:47,356 --> 00:26:49,566
Mommy will make you something better:
221
00:26:49,692 --> 00:26:53,202
..a big-boy fruit treat
with five different colours.
222
00:27:01,537 --> 00:27:06,497
She waited all this time to have one
child. She's not gonna have another.
223
00:27:24,768 --> 00:27:26,808
(knock on door)
224
00:27:28,647 --> 00:27:31,727
Francesco! Cristina!
225
00:27:34,570 --> 00:27:36,820
- Ah, buongiorno.
- Oh, Francesco!
226
00:28:03,057 --> 00:28:04,177
- Cristina.
- Michaela.
227
00:28:06,518 --> 00:28:07,598
Ciao.
228
00:28:17,988 --> 00:28:23,988
Everyone, this is Lorenzo's sister
and brother, all the way from Rome.
229
00:29:06,078 --> 00:29:08,118
This does not make sense.
230
00:29:09,581 --> 00:29:12,211
Lorenzo's saturated fats have risen.
231
00:29:12,334 --> 00:29:17,464
We eliminate them from his diet,
and in his blood they increase.
232
00:29:18,674 --> 00:29:23,014
If these very long-chain saturated fats
are destroying his mind,...
233
00:29:23,137 --> 00:29:25,677
..then surely we should
take him off the diet.
234
00:29:25,806 --> 00:29:28,136
(Nikolais) Mr Odone, please be patient.
235
00:29:28,267 --> 00:29:33,107
Your son has been on the diet only six
weeks. Wait until the end of the trial.
236
00:29:33,230 --> 00:29:38,070
Dr Nikolais, what about the other boys?
What results are you seeing in them?
237
00:29:38,193 --> 00:29:41,073
As with Lorenzo, it's too early to tell.
238
00:29:41,196 --> 00:29:44,776
We need the study to run
for the full six months.
239
00:29:44,950 --> 00:29:47,370
That will tell you what
is obvious right now,...
240
00:29:47,494 --> 00:29:52,174
..that avoiding apple skins and pizza
has no effect on this brutal disease.
241
00:29:52,291 --> 00:29:58,711
Now, please, Doctor, is there anyone out
there who is chasing a definitive therapy?
242
00:29:59,506 --> 00:30:03,586
You judge us too hastily. The French
have tried bone-marrow transplants,...
243
00:30:03,719 --> 00:30:07,309
..and in Boston we're about
to try immunosuppression.
244
00:30:07,473 --> 00:30:11,443
- Why haven't we heard of these before?
- The transplants were disastrous...
245
00:30:11,602 --> 00:30:14,692
..and the immunosuppression
is highly experimental.
246
00:30:14,813 --> 00:30:17,323
The protocol has been limited
to six boys,...
247
00:30:17,441 --> 00:30:20,861
..all more profoundly
afflicted than your son.
248
00:30:20,986 --> 00:30:24,616
For God's sake! How afflicted
does he need to be?
249
00:30:24,782 --> 00:30:27,952
It's a school, Lorenzo,
like any other school.
250
00:30:28,077 --> 00:30:33,247
- And it's full of doctors?
- Yes. Some of the cleverest in America.
251
00:30:33,707 --> 00:30:36,037
- What colour is that cross?
- Red.
252
00:30:37,127 --> 00:30:39,167
That's right. It's red.
253
00:30:40,506 --> 00:30:44,886
I'll speak to your parents for a second.
Leah's gonna take your blood pressure.
254
00:30:45,010 --> 00:30:47,010
I'll be right back.
255
00:30:47,179 --> 00:30:49,849
(Leah) I'll just put this around your arm.
256
00:30:50,974 --> 00:30:53,854
You've had this done before, haven't you?
257
00:30:55,521 --> 00:30:59,531
Look, it's important you both
know exactly what's going on.
258
00:30:59,650 --> 00:31:02,740
Cyclophosphides are no picnic.
This is chemotherapy.
259
00:31:02,861 --> 00:31:07,071
We're gonna be suppressing
his immune system. It's very high-risk.
260
00:31:07,199 --> 00:31:10,829
We'll need to keep him here
at least three weeks.
261
00:31:10,953 --> 00:31:14,503
Now, Lorenzo is still walking,
talking and communicating.
262
00:31:14,665 --> 00:31:16,915
But that could all change.
263
00:31:17,042 --> 00:31:21,172
Now, knowing all this, do you
still want us to go ahead with it?
264
00:31:23,424 --> 00:31:25,634
Given the alternatives, yes.
265
00:31:37,563 --> 00:31:41,483
The faculty is very grateful
to Lorenzo for doing this.
266
00:31:54,038 --> 00:31:58,788
Ladies and gentlemen, this is Lorenzo
Odone, whom I've spoken to you about.
267
00:31:58,917 --> 00:32:01,997
Now, young Mr Odone,
you need to come with me.
268
00:32:05,007 --> 00:32:07,047
You are getting so big!
269
00:32:09,094 --> 00:32:12,854
Now, I'm gonna put you up here
so we can all see you, OK?
270
00:32:12,973 --> 00:32:14,483
Attaboy.
271
00:32:16,435 --> 00:32:19,095
Ten weeks after diagnosis
we observe hemianopia...
272
00:32:19,229 --> 00:32:21,519
..with transient horizontal nystagmus.
273
00:32:21,648 --> 00:32:24,188
The pupillary light reflexes
are still intact,...
274
00:32:24,318 --> 00:32:26,278
..and, as yet, there's no optic atrophy.
275
00:32:26,403 --> 00:32:29,953
However, there is evidence of
early occipital-lobe involvement.
276
00:32:30,115 --> 00:32:34,655
(drawn-out) Why are all
these people here?
277
00:32:34,787 --> 00:32:40,667
- I beg your pardon, Lorenzo?
- Why are all these people here?
278
00:32:40,793 --> 00:32:43,463
He asks why all these people are here.
279
00:32:44,672 --> 00:32:47,932
Well, they're all doctors...
280
00:32:48,050 --> 00:32:51,140
..and they want to learn
how to help other boys in the future.
281
00:32:51,261 --> 00:32:53,761
Other boys with the boo-boo?
282
00:32:54,181 --> 00:32:57,521
- Yes, darling.
- Mm-hm.
283
00:32:58,102 --> 00:33:00,152
Thank you, Lorenzo.
284
00:33:02,231 --> 00:33:07,151
Now, in the scanning speech,
we look for both ends of the pathology:
285
00:33:07,277 --> 00:33:11,567
..centrally for the dysphasia,
and peripherally for the dysarthria.
286
00:33:12,908 --> 00:33:16,158
Now, Lorenzo, would you
walk for me, please?
287
00:33:17,830 --> 00:33:19,460
Attaboy.
288
00:33:20,708 --> 00:33:23,378
That's right. Hold my hands.
289
00:33:23,502 --> 00:33:25,552
That's right.
290
00:33:27,006 --> 00:33:31,716
Two months ago there was simply motor
lag. Now note the characteristic gait.
291
00:33:31,844 --> 00:33:37,644
It's due mostly to hyperreflexia, but
exacerbated by the encroaching paresis.
292
00:33:38,475 --> 00:33:40,555
You're doing very well. Keep coming.
293
00:33:40,686 --> 00:33:45,436
Only if you stop talking like that.
294
00:34:20,851 --> 00:34:23,771
Hello, Mr Odone. Have I got that right?
295
00:34:23,896 --> 00:34:26,646
- (on phone) Odo-ne.
- Odo-ne? I'm sorry.
296
00:34:26,774 --> 00:34:29,614
Ellard Muscatine.
I'm with the ALD Foundation.
297
00:34:29,735 --> 00:34:34,025
We heard about your boy Lorenzo,
and we'd like to offer you some help.
298
00:34:34,156 --> 00:34:36,076
You're a doctor?
299
00:34:36,241 --> 00:34:41,251
Doctor? Heck, no. I'm a machinist from
Allequippa, PA, but I'm an ALD parent.
300
00:34:41,413 --> 00:34:47,003
This is my second time around, so I know
exactly what you're going through.
301
00:34:48,170 --> 00:34:51,840
My wife Loretta and I,
we run the foundation.
302
00:34:52,841 --> 00:34:57,181
We organise counselling,
conduct seminars, fund research.
303
00:34:57,304 --> 00:34:59,814
We have 500 member families,
not only American,...
304
00:34:59,932 --> 00:35:04,142
..but from Portugal,
Israel, Japan, Australia...
305
00:35:04,269 --> 00:35:07,109
And we're growing all the time.
306
00:35:07,231 --> 00:35:11,241
We wanted you and Mrs Odone
to know that you're not alone.
307
00:35:20,494 --> 00:35:23,504
Hi. Ellard Muscatine.
Welcome to the conference.
308
00:35:23,622 --> 00:35:26,002
- Augusto Odone.
- Michaela.
309
00:35:26,166 --> 00:35:28,996
Oh, very nice to meet you.
Please come in.
310
00:35:30,212 --> 00:35:33,132
This is my wife Loretta,
and these are the Odones.
311
00:35:33,298 --> 00:35:35,968
Great. I'm so happy
you were able to come.
312
00:35:36,093 --> 00:35:39,393
Because I think a lot of it is denial.
313
00:35:39,513 --> 00:35:43,733
We don't want to say anything's going
on. We're strong and we can handle it.
314
00:35:44,309 --> 00:35:48,479
But this is the place and
this is the time to let it all out,...
315
00:35:49,606 --> 00:35:51,856
..let the barriers come down...
316
00:35:51,984 --> 00:35:55,244
..and to share your feelings
and get it off your chest.
317
00:35:55,362 --> 00:35:59,072
It's hard to believe that
things can get worse.
318
00:36:00,868 --> 00:36:02,908
But they will.
319
00:36:04,288 --> 00:36:07,168
One thing nobody wants to
talk about is what happens,...
320
00:36:07,291 --> 00:36:10,251
..or does not happen, between
the two of you in the bedroom.
321
00:36:10,377 --> 00:36:12,497
A whole year
we couldn't touch each other.
322
00:36:13,088 --> 00:36:17,798
My husband stood by me all the way
but, oh my, does it test the men!
323
00:36:17,926 --> 00:36:21,056
- And the weak ones just up and go.
- Even the strong ones leave.
324
00:36:21,221 --> 00:36:25,771
My guy hung in there when our first boy
took sick. Then we had little Jake tested.
325
00:36:25,893 --> 00:36:29,193
Arlen wanted a whole bunch of boys,
a whole ball team.
326
00:36:29,355 --> 00:36:32,935
He's gonna have 'em too...
with some other gal.
327
00:36:34,360 --> 00:36:36,450
(Loretta) We'd like to thank the parents...
328
00:36:36,570 --> 00:36:40,620
..who gave so generously to the fund
for the immunosuppression trial.
329
00:36:40,741 --> 00:36:44,121
The doctors have said that
this experiment contributed greatly...
330
00:36:44,244 --> 00:36:46,754
..to the understanding of ALD.
331
00:36:46,872 --> 00:36:51,252
Betty and Tom Knowles,
$250 in memory of Corey.
332
00:36:51,377 --> 00:36:55,457
Dr and Mrs Liebowitz,
$500 in memory of Joel.
333
00:36:55,589 --> 00:37:00,549
Mr and Mrs Higgins,
$1,000 in memory of Adrian and Julian.
334
00:37:00,719 --> 00:37:04,639
26 people have sent in
recipes for the newsletter.
335
00:37:04,807 --> 00:37:08,437
Now, we still need ideas for
snack foods and breakfast treats.
336
00:37:08,560 --> 00:37:11,520
Remember, all recipes should be
low-fat...
337
00:37:11,647 --> 00:37:14,777
..and use only the foods
allowed on the institute diet.
338
00:37:14,900 --> 00:37:17,030
- Excuse me.
- Yes, ma'am?
339
00:37:17,194 --> 00:37:19,364
Our son has complied with this diet,...
340
00:37:19,488 --> 00:37:24,618
..but his levels of saturated C24 and
C26 have risen for two months in a row.
341
00:37:24,743 --> 00:37:27,123
That's exactly what's happened to Jaybird.
342
00:37:27,246 --> 00:37:31,076
Ah, well, perhaps before we talk
about publishing cookbooks,...
343
00:37:31,250 --> 00:37:36,210
..we should ask ourselves
if the diet is working at all.
344
00:37:38,132 --> 00:37:40,802
- Shouldn't we?
- Damn right we should.
345
00:37:40,926 --> 00:37:42,966
This is not the way we do things here.
346
00:37:43,095 --> 00:37:48,015
But there are two families here
with this paradox. Maybe there are more.
347
00:37:48,142 --> 00:37:50,232
Shouldn't we open it for discussion?
348
00:37:50,352 --> 00:37:53,812
- My boy's levels are rising.
- Now there are three families.
349
00:37:53,939 --> 00:37:57,689
So maybe we should...
Could we have a show of hands?
350
00:37:57,860 --> 00:38:00,150
Then we'll see how many
families there are.
351
00:38:00,279 --> 00:38:04,579
You don't understand. This is a formal
pilot study. It has to run for six months.
352
00:38:04,700 --> 00:38:07,620
We're not scientists.
We don't interpret experiments.
353
00:38:07,745 --> 00:38:10,575
That's the solemn
responsibility of the doctors.
354
00:38:10,706 --> 00:38:13,036
Come on, Ellard!
Let's have a show of hands.
355
00:38:13,208 --> 00:38:15,248
No, that would be misleading.
356
00:38:15,377 --> 00:38:18,667
The medical folks call
this kind of evidence anecdotal.
357
00:38:18,797 --> 00:38:22,177
- What's wrong with a show of hands?
- It wouldn't have any meaning.
358
00:38:22,343 --> 00:38:25,103
- Excuse me. May I say something?
- Sure.
359
00:38:25,220 --> 00:38:30,640
The only way that the doctors can get
useful results is with a strict protocol...
360
00:38:30,768 --> 00:38:33,518
..and statistical samples
in a control group.
361
00:38:33,645 --> 00:38:36,395
And a proper time frame.
Doctors have to be careful.
362
00:38:36,565 --> 00:38:39,775
Clinical trials must withstand
a tremendous amount of scrutiny.
363
00:38:39,902 --> 00:38:42,572
This is the way that
medical science works.
364
00:38:42,738 --> 00:38:46,408
That's the only way the scientists
can get the information they need.
365
00:38:46,533 --> 00:38:52,713
So what you're saying is that our children
are in the service of medical science.
366
00:38:52,790 --> 00:38:54,830
How foolish of me. I always assumed...
367
00:38:55,000 --> 00:38:58,840
..that medical science
was in the service of the sufferers.
368
00:38:59,004 --> 00:39:01,054
Yes. Uh, thank you.
369
00:39:01,799 --> 00:39:04,509
Uh, now I think it's time
we get back to our agenda.
370
00:39:04,635 --> 00:39:10,345
Why? So we can discuss further salvaging
our marriages and managing our grief?
371
00:39:10,474 --> 00:39:15,104
What about the children?
No one here is discussing the children.
372
00:39:16,355 --> 00:39:18,645
Thank you.
373
00:39:18,774 --> 00:39:23,244
Now if Mary has nothing further to add,
I would like to introduce Dr Chapel...
374
00:39:23,362 --> 00:39:26,242
..to talk about the nasogastric tube
and suction machine.
375
00:39:26,448 --> 00:39:29,868
Would you all join me
in giving him a very warm welcome?
376
00:39:29,994 --> 00:39:32,044
(applause)
377
00:39:37,126 --> 00:39:41,046
Thank you, Madam President.
Thank you, Ellard. Ladies and gentlemen...
378
00:39:57,604 --> 00:39:59,654
(¶ classical music)
379
00:40:00,649 --> 00:40:03,739
- (Lorenzo) Now hold my hand.
- Yes, sweetie.
380
00:40:22,379 --> 00:40:25,879
- Now the story.
- What story is that, sweetheart?
381
00:40:27,092 --> 00:40:30,352
La notte di San Lorenzo.
382
00:40:30,471 --> 00:40:32,261
San Lorenzo, who is...?
383
00:40:32,389 --> 00:40:34,599
(drawls) My patron saint.
384
00:40:34,767 --> 00:40:37,977
And saint of my father's village.
385
00:40:38,103 --> 00:40:40,863
That's right. And what happened to him?
386
00:40:40,981 --> 00:40:43,441
He was in Rome.
387
00:40:43,567 --> 00:40:45,607
Mm-hm.
388
00:40:46,570 --> 00:40:49,110
And... I forgot.
389
00:40:50,449 --> 00:40:52,829
Well, many years ago...
390
00:40:52,951 --> 00:40:58,621
..the bad guy says to him
"Bring us the riches of your church."
391
00:40:59,583 --> 00:41:05,803
And Lorenzo, he brings them
the beggars and the sick people...
392
00:41:07,007 --> 00:41:10,967
- ..and he says...
- (drawls) "These are our riches."
393
00:41:11,095 --> 00:41:12,505
Yes!
394
00:41:12,638 --> 00:41:17,308
- Bravo, Lorenzo, bravo.
- That's wonderful, sweetheart. So clever.
395
00:41:17,476 --> 00:41:20,226
And tonight, August 10th, is...
396
00:41:20,938 --> 00:41:25,728
La notte di San Lorenzo.
397
00:41:26,443 --> 00:41:28,743
(Michaela) The night
of the shooting stars.
398
00:41:28,862 --> 00:41:31,322
(Augusto) When anything can happen.
399
00:41:57,933 --> 00:41:59,393
Micha...
400
00:41:59,518 --> 00:42:01,558
Sh, sh, sh.
401
00:42:02,730 --> 00:42:06,780
When we first went to the Comoros,
what did we do?
402
00:42:08,402 --> 00:42:11,162
- We got to know the country, right?
- Yes.
403
00:42:11,280 --> 00:42:15,700
We studied. We got to know
the language, resources, its laws.
404
00:42:15,826 --> 00:42:17,866
We studied, right?
405
00:42:18,746 --> 00:42:22,916
We should treat Lorenzo's illness
like another country.
406
00:42:23,042 --> 00:42:26,002
- I don't quite see the analogy.
- All right, all right.
407
00:42:26,128 --> 00:42:28,918
- ALD has many dimensions, right?
- Yes.
408
00:42:29,048 --> 00:42:35,098
So in order to understand it, we need
a command of genetics, biochemistry,...
409
00:42:35,220 --> 00:42:38,430
..microbiology, neurology, ology-ology...
410
00:42:38,557 --> 00:42:41,187
Augusto, we don't have time
to go to medical school.
411
00:42:41,310 --> 00:42:45,520
Michaela, the doctors are in the dark.
They're groping in the dark.
412
00:42:45,647 --> 00:42:49,107
They've got Lorenzo
on a turvy-topsy diet.
413
00:42:49,234 --> 00:42:54,494
And that bloody immunosuppression
is brutal and useless.
414
00:42:54,615 --> 00:42:59,575
Michaela, we should not have
consigned him blindly into their hands.
415
00:43:00,579 --> 00:43:03,829
He should not suffer by our ignorance.
416
00:43:03,957 --> 00:43:08,247
We take responsibility.
So... we read a little.
417
00:43:09,254 --> 00:43:11,924
And we go out and inform ourselves.
418
00:43:13,384 --> 00:43:18,144
But... to miss time with him
while he can still speak to us...
419
00:43:18,263 --> 00:43:22,563
Yes, I know, I know.
But he expects it of us.
420
00:44:09,857 --> 00:44:12,527
I want to take Lorenzo off the diet.
421
00:44:12,693 --> 00:44:16,363
He's been eating cardboard for 19 weeks,
and what's it getting us?
422
00:44:16,488 --> 00:44:20,948
- And feed him what?
- Normal foods. Things a child likes.
423
00:44:21,076 --> 00:44:24,326
Full of the long-chain fats
that we know destroy his myelin?
424
00:44:24,455 --> 00:44:28,415
Look. On the diet,
his blood fats are still rising.
425
00:44:28,542 --> 00:44:31,172
- Yes, I know, Michaela.
- It doesn't make any sense.
426
00:44:31,295 --> 00:44:34,375
But we don't know enough.
We don't know enough.
427
00:44:34,506 --> 00:44:36,796
We don't know it clearly enough.
428
00:44:36,967 --> 00:44:39,257
Here, Michaela,
let me show you something.
429
00:44:39,386 --> 00:44:41,426
All right, here.
430
00:44:42,556 --> 00:44:44,596
Un piccolo acquaio.
431
00:44:44,725 --> 00:44:48,475
- A kitchen sink?
- Yes, yes. Little kitchen sink.
432
00:44:48,604 --> 00:44:51,944
All right. Now here is the tap. Mm-hm?
433
00:44:52,066 --> 00:44:55,066
And here's the sink basin
and the plughole, right?
434
00:44:55,194 --> 00:45:00,954
All right. Very long-chain saturated fats
are introduced by what we eat, right?
435
00:45:01,075 --> 00:45:03,695
- Yes?
- Now, also produced by the body...
436
00:45:03,827 --> 00:45:07,457
..or manufactured by the body,
these very same fats.
437
00:45:07,623 --> 00:45:10,333
- Biosynthesis.
- Biosynthesis, right.
438
00:45:10,459 --> 00:45:12,709
Now, normally they are not harmful...
439
00:45:12,836 --> 00:45:17,626
..because this enzyme
eliminate the excess, right?
440
00:45:18,258 --> 00:45:22,928
But in Lorenzo, this enzyme
is defective from genetics.
441
00:45:23,055 --> 00:45:26,225
His plughole is blocked, right?
442
00:45:26,350 --> 00:45:27,430
Yes.
443
00:45:27,559 --> 00:45:32,059
We know that very long-chain saturated
fats are made up of carbon atoms.
444
00:45:32,189 --> 00:45:35,399
C2, 4, 6, 8...
all the way up the chain, right?
445
00:45:36,276 --> 00:45:42,776
But in Lorenzo,
the saturated C24 and C26...
446
00:45:42,908 --> 00:45:46,328
..rise to four times the normal level.
447
00:45:48,247 --> 00:45:53,417
OK, now, here's where we have
a little paradox, a mystery, OK?
448
00:45:54,753 --> 00:45:59,843
Why, when we reduce the dietary intake
of saturated fats,...
449
00:45:59,967 --> 00:46:05,137
..does the level in our sink, which
we would expect to go down, go up?
450
00:46:05,806 --> 00:46:09,516
So, logically, we should
take him off the diet.
451
00:46:09,685 --> 00:46:11,935
Well, Michaela,...
452
00:46:12,062 --> 00:46:15,072
..just as logically, we should not.
453
00:46:15,190 --> 00:46:17,650
Because let's not do
what the doctors did.
454
00:46:17,776 --> 00:46:20,606
Let's not act without knowing why.
455
00:46:21,822 --> 00:46:26,832
Why, when we turn off this tap,
does the level in our sink rise?
456
00:46:29,705 --> 00:46:31,325
I married a plumber.
457
00:46:31,457 --> 00:46:36,377
You married a man with a simple mind,
who asks simple questions, that's all.
458
00:46:36,503 --> 00:46:38,633
Here, Michaela. Brain food.
459
00:46:38,756 --> 00:46:41,046
- Come on.
- Oh. Thank you.
460
00:47:39,984 --> 00:47:44,204
Polish rats! I think I have
an explanation for the paradox.
461
00:47:44,321 --> 00:47:46,781
Lorenzo, kiss your clever mother.
462
00:47:47,449 --> 00:47:53,159
Polish rats with a fatty-acid storage
disease. Let me use your kitchen sink.
463
00:47:55,499 --> 00:47:58,879
Here's our tap for what we eat.
464
00:48:00,879 --> 00:48:03,339
And here's our tap for biosynthesis.
465
00:48:03,465 --> 00:48:05,675
I see. Biosynthesis. Mm-hm.
466
00:48:07,052 --> 00:48:11,602
When the rats were deprived
of a specific fat in their diet,...
467
00:48:11,724 --> 00:48:15,644
..their body cells compensated
by overproducing it.
468
00:48:15,811 --> 00:48:19,151
- So if this holds true for humans...
- Then the diet is useless...
469
00:48:19,273 --> 00:48:23,403
..unless we can stop it overproducing,
slow down biosynthesis, sì?
470
00:48:23,527 --> 00:48:28,067
Yes, and there's more. And for this,
I deserve two kisses, my darling.
471
00:48:29,742 --> 00:48:33,622
In the summary, it talks about
the concept of fatty-acid manipulation.
472
00:48:33,746 --> 00:48:35,656
- What's that?
- Well,...
473
00:48:35,789 --> 00:48:39,709
..they stop the rats
producing one kind of fat...
474
00:48:41,170 --> 00:48:43,590
..by loading their diet with another kind.
475
00:48:43,714 --> 00:48:48,644
So maybe we could stop Lorenzo's body
from producing C24 and C26...
476
00:48:48,761 --> 00:48:53,101
..by loading his diet with another kind
of fat, one that's less harmful.
477
00:48:53,223 --> 00:48:56,103
We should have this translated
as soon as possible.
478
00:48:56,226 --> 00:48:59,306
I have some news too.
479
00:48:59,438 --> 00:49:01,648
It's a letter from Omouri.
480
00:49:01,774 --> 00:49:05,034
He wouldn't open it until you got home.
481
00:49:05,152 --> 00:49:07,612
- Omouri.
- Yes.
482
00:49:13,535 --> 00:49:15,655
Michaela, by tomorrow morning,...
483
00:49:15,788 --> 00:49:19,918
..your Polish rats will be
speaking to us in English. Hm?
484
00:49:21,710 --> 00:49:23,750
(Michaela) I've been thinking.
485
00:49:25,798 --> 00:49:30,048
I found that article by accident.
I just as easily could have missed it.
486
00:49:30,177 --> 00:49:34,927
It was written by a Polish biochemist,
who I'm sure knew nothing about ALD.
487
00:49:36,392 --> 00:49:40,232
Well, Michaela, still it gives us
a new line of inquiry.
488
00:49:40,354 --> 00:49:42,234
Yes, but it could take months.
489
00:49:42,398 --> 00:49:46,318
And there will be other leads that take
more time, and it's time we don't have.
490
00:49:46,485 --> 00:49:53,235
All these experts, working in isolation,
each one on his own piece of the jigsaw.
491
00:49:55,244 --> 00:50:00,084
Of course, a symposium is the best way
to accelerate the exchange of information.
492
00:50:00,207 --> 00:50:03,337
In that sense,
it's a very good idea, Mr Odone.
493
00:50:03,460 --> 00:50:05,670
Only... May I say something?
494
00:50:06,672 --> 00:50:11,142
Have you any idea how many children
in the United States die every year...
495
00:50:11,260 --> 00:50:14,220
..from choking on French fries?
496
00:50:14,346 --> 00:50:18,806
Many more than from
adrenoleukodystrophy.
497
00:50:18,934 --> 00:50:21,444
Ours is what is known as
an orphan disease.
498
00:50:21,562 --> 00:50:25,522
It's too small to be noticed,
too small to be funded,...
499
00:50:25,649 --> 00:50:29,189
..especially with the iron hand
of Reaganomics.
500
00:50:29,361 --> 00:50:34,781
So while, as I say, this remains a very
good idea, it's a luxury we can't afford.
501
00:50:34,908 --> 00:50:39,288
Well, we appreciate that,
so we have prepared a budget...
502
00:50:39,413 --> 00:50:41,833
..based on 40 participants for two days.
503
00:50:41,957 --> 00:50:46,337
We think it can be done for $35,000.
My wife and I will raise the money.
504
00:50:46,462 --> 00:50:49,802
- We can't ask you to bear the cost.
- Oh, no, no, no, no.
505
00:50:49,923 --> 00:50:52,553
That's the least of our concern.
506
00:50:52,676 --> 00:50:55,886
And of course, your institute
will not be at risk...
507
00:50:56,013 --> 00:51:00,733
..because the Odones
will underwrite any shortfall.
508
00:51:02,061 --> 00:51:05,861
And we took the liberty
of drafting an invitation list.
509
00:51:06,023 --> 00:51:09,613
Forgive me, Dr Nikolais.
We wish to make two conditions.
510
00:51:09,735 --> 00:51:14,025
We would like the symposium
to emphasise therapy,...
511
00:51:14,198 --> 00:51:19,368
..and Michaela and myself would like
to participate in the discussion.
512
00:51:28,962 --> 00:51:33,012
Martha, I'm afraid we'll have to
add to your workload,...
513
00:51:33,133 --> 00:51:35,973
..but it's in a very good cause.
514
00:51:36,095 --> 00:51:40,345
We've decided to convene
the first symposium on ALD.
515
00:51:41,433 --> 00:51:44,193
We should notify the Muscatines.
516
00:51:44,311 --> 00:51:47,901
Of course. The foundation could
help with the arrangement.
517
00:51:48,023 --> 00:51:52,493
They could even, perhaps...
find some funds.
518
00:51:54,196 --> 00:51:58,656
How about we hook it to the back of
the next Foundation Family Conference?
519
00:51:58,784 --> 00:52:01,874
- (Michaela) When would that be?
- Next summer. 4th of July.
520
00:52:02,037 --> 00:52:04,957
- That's nine months away!
- It will take us all that time...
521
00:52:05,124 --> 00:52:07,844
..to invite those busy doctors
and raise the money.
522
00:52:07,960 --> 00:52:11,260
- I don't think so.
- What's your time frame, Mrs Odone?
523
00:52:11,380 --> 00:52:14,760
- Five weeks from now. November 10th.
- That's not possible.
524
00:52:14,883 --> 00:52:16,593
Oh, I think it is.
525
00:52:16,719 --> 00:52:18,889
Pardon me,
but what is the point of rushing?
526
00:52:21,432 --> 00:52:25,522
As ALD parents, we both know
the answer to that inane question.
527
00:52:25,644 --> 00:52:28,814
If you want this to happen,
you're going about it the wrong way.
528
00:52:28,939 --> 00:52:31,819
- At least we are going about it.
- (Lorenzo drawls)
529
00:52:31,942 --> 00:52:34,862
- Sorry, I don't understand.
- He wants his diaper changed.
530
00:52:34,987 --> 00:52:38,277
- (dialling tone)
- Mrs Muscatine, look... Hello?
531
00:52:39,241 --> 00:52:41,201
Hello?
532
00:52:41,327 --> 00:52:44,327
They should be hung by their eyelashes.
533
00:52:44,455 --> 00:52:46,955
- They won't help?
- It doesn't look that way.
534
00:52:47,082 --> 00:52:49,132
- Good boy. I'll take him.
- No, I got it.
535
00:52:49,251 --> 00:52:52,171
- What'll you do? Mortgage the house?
- Not until I have to.
536
00:52:52,296 --> 00:52:53,756
Michaela!
537
00:53:03,515 --> 00:53:06,935
I've spent two months pulling
on the heartstrings of Washington...
538
00:53:07,061 --> 00:53:11,691
..to raise money for multiple sclerosis,
sudden infant death and cystic fibrosis.
539
00:53:11,815 --> 00:53:14,025
Then why exclude adrenoleukodystrophy?
540
00:53:14,193 --> 00:53:18,243
Because I also cover politics,
the arts, women's issues and stuff,...
541
00:53:18,405 --> 00:53:21,155
..and my readership likes
to have a little balance.
542
00:53:21,283 --> 00:53:26,043
I cannot do another medical story
right now. Maybe in another month.
543
00:53:27,831 --> 00:53:30,501
Joyce, I think you should meet my son.
544
00:53:35,047 --> 00:53:37,087
My friends...
545
00:53:37,883 --> 00:53:40,393
This is so generous.
546
00:53:40,511 --> 00:53:44,471
You know, Augusto, our wives
are eager to form a committee...
547
00:53:44,598 --> 00:53:48,348
- ..to, perhaps, help with hospitality.
- Oh, wonderful, wonderful.
548
00:53:51,230 --> 00:53:54,860
Not only will we be saving money,
but they'll be extremely well fed.
549
00:53:54,984 --> 00:53:58,994
For breakfast, French pastry, correct?
Lunch, UN finger food.
550
00:53:59,154 --> 00:54:02,284
- (knock on door)
- The British will do afternoon tea.
551
00:54:02,408 --> 00:54:05,998
And for dinner, I know
a marvellous Italian cook.
552
00:54:08,956 --> 00:54:13,286
Are you needin' another pair of hands?
I'll lick envelopes, serve coffee, whatever.
553
00:54:13,460 --> 00:54:17,210
And this is for your boy. I grow
the best organic produce in Virginia.
554
00:54:17,381 --> 00:54:20,221
- Thank you.
- You don't remember me!
555
00:54:20,342 --> 00:54:24,642
Wendy Gimble. Foundation Family
Conference. I yelled louder than you.
556
00:54:24,763 --> 00:54:30,233
- Yes, of course. You have two boys.
- We lost Jaybird, but Jake here is fine.
557
00:54:30,352 --> 00:54:32,442
We think what you're doing is fantastic.
558
00:54:32,563 --> 00:54:34,823
Hello, Jake. Come on in. Thank you.
559
00:54:34,940 --> 00:54:39,990
When I read about what you were doing,
I thought "It's time we did something."
560
00:54:40,112 --> 00:54:43,872
- Please, come in and meet the others.
- Is that Lorenzo?
561
00:54:44,033 --> 00:54:48,253
Yes. Lorenzo, this is Jake.
He's a young man of your age.
562
00:54:48,370 --> 00:54:53,170
Look, Lorenzo, a great big pumpkin.
Let's go down and feel how big it is.
563
00:54:53,292 --> 00:54:55,962
(Lorenzo drawls)
564
00:54:57,588 --> 00:54:59,968
- What, sweetheart?
- (drawls)
565
00:55:02,468 --> 00:55:05,678
I'm sorry, Lorenzo.
Let's try that again.
566
00:55:05,804 --> 00:55:08,894
(drawls, shouting)
567
00:55:28,911 --> 00:55:31,461
This morning I could still understand him.
568
00:55:37,628 --> 00:55:42,678
(man) When we can clone the ALD gene,
we can identify the deficient enzyme,...
569
00:55:42,800 --> 00:55:46,180
..mass-produce the gene,
implant it into ALD sufferers...
570
00:55:46,303 --> 00:55:50,433
- ..and normalise their metabolism.
- (Augusto) How long would that take?
571
00:55:55,521 --> 00:55:57,361
Seven to ten years.
572
00:55:57,481 --> 00:56:00,361
You see, science has its own time,...
573
00:56:00,484 --> 00:56:04,034
..and, very often, any new advance
can be a matter of serendipity.
574
00:56:04,154 --> 00:56:07,954
(Nikolais) For the last six months, all
our ALD boys have been on a regimen...
575
00:56:08,075 --> 00:56:12,285
..which excludes saturated C24 and 26.
576
00:56:13,080 --> 00:56:16,000
But despite this restriction in the diet,...
577
00:56:16,125 --> 00:56:20,335
..these long-chain fatty acids
have remained the same,...
578
00:56:20,462 --> 00:56:23,342
..in some cases even increasing.
579
00:56:24,091 --> 00:56:29,511
Now, this compensating increase
I put down to biosynthesis.
580
00:56:29,638 --> 00:56:32,978
But, Gus, if you could maintain the diet...
581
00:56:33,100 --> 00:56:36,770
..and somehow inhibit biosynthesis,
you'd have a therapy.
582
00:56:36,895 --> 00:56:39,355
No, you wouldn't quite have a therapy.
583
00:56:39,481 --> 00:56:43,571
You would have a way of
lowering the fatty acids to normal.
584
00:56:43,694 --> 00:56:45,744
(speaks Japanese)
585
00:56:51,493 --> 00:56:54,963
If you wish to inhibit biosynthesis,...
586
00:56:55,080 --> 00:56:58,750
..have you considered
fatty-acid manipulation?
587
00:56:58,876 --> 00:57:01,796
(speaks Japanese)
588
00:57:08,218 --> 00:57:13,308
There is some literature,
a rat study, Russian or Polish.
589
00:57:13,432 --> 00:57:16,272
(Michaela) Polish. Straszak.
I have copies right here.
590
00:57:16,393 --> 00:57:20,613
Polish Journal of Biological Sciences
1979, Volume II.
591
00:57:20,773 --> 00:57:25,033
They loaded the diet with one fat
and decreased biosynthesis of another.
592
00:57:25,152 --> 00:57:28,112
Yes, I remember this article.
593
00:57:28,238 --> 00:57:33,328
And also in Canada, they have seen
the same thing in miniature swine.
594
00:57:33,452 --> 00:57:36,752
(man) As a matter of fact,
I've seen it in human cells.
595
00:57:36,872 --> 00:57:38,922
In human ALD cells.
596
00:57:38,999 --> 00:57:43,799
From patients with ALD,
I took fibroblasts - skin cells, OK?
597
00:57:43,921 --> 00:57:46,091
Each one carries the same genetic defect.
598
00:57:46,256 --> 00:57:51,046
I incubated them with oleic acid and
reduced the saturated C24 and C26...
599
00:57:51,220 --> 00:57:53,810
- ..by more than 50 per cent.
- Excuse me, Doctor.
600
00:57:53,931 --> 00:57:56,641
You said oleic acid?
601
00:57:57,059 --> 00:58:00,349
Yes, monounsaturated C18,
the main component of olive oil.
602
00:58:00,521 --> 00:58:03,861
- Surely this is the basis for a therapy.
- (man) Slow down.
603
00:58:03,983 --> 00:58:08,073
These are studies in cultured cells. We
don't know it'll work in a human being.
604
00:58:08,195 --> 00:58:12,275
Well, then, take the olive oil
and try it in a patient and see...
605
00:58:12,408 --> 00:58:17,248
Augusto, olive oil is forbidden
in the diet: C24, C26.
606
00:58:17,371 --> 00:58:21,211
Yes, but then use whatever
Dr Rizzo fed his fibroblast.
607
00:58:21,333 --> 00:58:26,423
Pure oleic acid would be very toxic to
an intact organism, an animal or human.
608
00:58:26,547 --> 00:58:31,387
It would need to be the triglyceride form,
which is edible, but that's not available.
609
00:58:31,510 --> 00:58:36,220
All right, can't you take ordinary
olive oil and extract the C24 and C26?
610
00:58:36,348 --> 00:58:41,308
You could, but it's a very complicated
procedure and would be very expensive,...
611
00:58:41,437 --> 00:58:44,687
..especially to produce the quantities
for a clinical trial.
612
00:58:44,815 --> 00:58:47,025
Have you contacted chemical companies?
613
00:58:47,151 --> 00:58:49,191
No one will tool up for that.
614
00:58:49,278 --> 00:58:53,868
Not for an experiment,
not for something with no market.
615
00:58:53,991 --> 00:58:56,451
- Then you haven't tried?
- No.
616
00:59:01,540 --> 00:59:06,800
If we were able to get triglyceride,
then we can change all that, right?
617
00:59:06,920 --> 00:59:09,840
Yes. It has to be triglyceride
to be edible.
618
00:59:09,965 --> 00:59:12,045
(Michaela) Edible form. Triglyceride.
619
00:59:12,176 --> 00:59:14,176
(man on phone)
No one here can help you.
620
00:59:14,303 --> 00:59:16,683
Then do you know anyone else who does?
621
00:59:16,847 --> 00:59:19,057
I'll send you back to the switchboard.
622
00:59:19,183 --> 00:59:23,353
- (telephonist) Which extension, please?
- Research and development.
623
00:59:23,479 --> 00:59:24,479
(woman) R&D.
624
00:59:24,605 --> 00:59:27,855
- I need a triglyceride form of oleic acid.
- Your name, Doctor?
625
00:59:27,983 --> 00:59:30,403
- No, I'm not a doctor.
- Are you with a company?
626
00:59:30,527 --> 00:59:33,857
No, I am not with any company.
I'm the mother of a sick child.
627
00:59:34,031 --> 00:59:35,371
- A mother?
- That's right.
628
00:59:35,491 --> 00:59:37,241
- And you want...?
- Oleic acid.
629
00:59:37,368 --> 00:59:38,988
- The lines are busy.
- I'll wait.
630
00:59:39,161 --> 00:59:42,501
Papa makes you
spaghetti al pomodoro,...
631
00:59:42,623 --> 00:59:47,423
..seasoned with basilico,
the royal herb for our prince.
632
00:59:47,544 --> 00:59:50,094
Badabib, badabab, badaboom.
633
00:59:51,674 --> 00:59:55,514
Come on, Lorenzo, take a little bit.
That's a boy.
634
00:59:55,636 --> 00:59:58,176
(Michaela) The best lead
came from the symposium:
635
00:59:58,305 --> 01:00:02,685
..oleic acid in the triglyceride form.
Now it's our only hope for Lorenzo.
636
01:00:02,810 --> 01:00:06,560
(woman) Don't fret, Mrs Odone.
You will hear from him within the hour.
637
01:00:06,647 --> 01:00:09,397
- You can be sure of it.
- Thank you. That's 301...
638
01:00:09,525 --> 01:00:11,435
Don't worry, I have the number.
639
01:00:11,568 --> 01:00:14,858
- Thank you very much.
- You're welcome. Bye-bye.
640
01:00:18,867 --> 01:00:25,077
So, as the swallowing reflexes weaken,
he's less able to handle his own saliva.
641
01:00:25,874 --> 01:00:30,924
We'll all have to be pretty vigilant. We
really have to stay on top of this thing.
642
01:00:31,088 --> 01:00:35,968
If we allow any saliva to get down into
his respiratory tract, we block his airway.
643
01:00:36,093 --> 01:00:38,183
- (phone rings)
- We don't wanna do that.
644
01:00:38,345 --> 01:00:40,425
Here we go. Put your
thumb over the valve.
645
01:00:40,556 --> 01:00:43,056
When you don't want suction,
release your thumb.
646
01:00:43,183 --> 01:00:47,733
Hi. It's ProtoChem again.
I'll connect you to our Mr Pellerman.
647
01:00:55,070 --> 01:00:59,120
- I believe you want some oleic acid.
- Yes, in triglyceride form.
648
01:00:59,241 --> 01:01:03,451
You're lucky. We're testing a glycerol
trioleate here as an industrial lubricant.
649
01:01:03,579 --> 01:01:06,959
Industrial? Then... is it fit
for human consumption?
650
01:01:07,082 --> 01:01:09,292
I don't see why not.
It's a purified olive oil.
651
01:01:09,418 --> 01:01:14,628
Without saturates? Pure monounsaturated
C18 in triglyceride form?
652
01:01:14,757 --> 01:01:16,427
- Yes, ma'am.
- You're sure?
653
01:01:16,550 --> 01:01:19,760
It happens we have one bottle here,
sitting idle on the shelf.
654
01:01:19,887 --> 01:01:23,097
Marvellous! How can we
get our hands on it?
655
01:01:23,223 --> 01:01:25,643
- Sorry. Go ahead.
- How can we get our hands on it?
656
01:01:27,102 --> 01:01:29,102
This is... beautiful.
657
01:01:29,897 --> 01:01:33,687
- And it's entirely harmless?
- Gus, you're talking to an Italian.
658
01:01:33,817 --> 01:01:38,407
- It's only olive oil.
- Yes, that's harmless. It's like... sugar.
659
01:01:38,530 --> 01:01:41,370
And yet, to a diabetic,
sugar can be lethal.
660
01:01:41,533 --> 01:01:46,583
You see, the trouble is we don't know to
what extent Lorenzo can metabolise fats.
661
01:01:46,705 --> 01:01:51,995
Yes, well, Gus, it's been seven months
since Lorenzo was diagnosed.
662
01:01:52,127 --> 01:01:54,797
Now he is silent. He's immobile.
663
01:01:55,798 --> 01:01:57,928
Augusto, I am a scientist,...
664
01:01:58,050 --> 01:02:01,390
..and I'm of absolutely
no use to you whatever...
665
01:02:01,512 --> 01:02:03,932
..unless I can maintain my objectivity.
666
01:02:04,056 --> 01:02:07,346
And I am not a scientist. I am a father.
667
01:02:07,476 --> 01:02:12,106
And nobody can tell me what dressing
I put on my kid's salad, OK?
668
01:02:14,566 --> 01:02:16,606
Augusto...
669
01:02:17,277 --> 01:02:20,857
This science of medicine.
You know, it's not like physics.
670
01:02:20,990 --> 01:02:24,240
There's no mathematical certainty.
671
01:02:24,368 --> 01:02:30,208
And because we deal with human beings
who suffer, it can appear heartless.
672
01:02:30,374 --> 01:02:32,424
I know.
673
01:02:36,839 --> 01:02:41,179
You realise that any collaboration
of mine would have to be unofficial?
674
01:02:41,301 --> 01:02:45,721
Sì, sì, of course. Now, the dose.
We think 40 grams a day.
675
01:02:45,848 --> 01:02:48,888
- That's too much. Say 30.
- 30?
676
01:02:49,018 --> 01:02:52,938
Yes. Any more than that
might damage your son's liver.
677
01:02:53,063 --> 01:02:55,323
Darling, they're about to start.
678
01:02:58,152 --> 01:03:02,452
We're going to send this blood away
to establish a baseline, my brave boy.
679
01:03:02,573 --> 01:03:06,793
Because today we all start
the fight against the boo-boo.
680
01:03:06,952 --> 01:03:09,332
There. All done.
681
01:03:12,416 --> 01:03:16,746
Lorenzino, this year we celebrate
Thanksgiving a little early...
682
01:03:16,879 --> 01:03:21,009
..with a fine barracuda
like we used to eat in the Comoros, huh?
683
01:03:21,133 --> 01:03:24,723
And Papa has cooked it
with the aromatic dill.
684
01:03:24,845 --> 01:03:26,885
And now...
685
01:03:28,140 --> 01:03:32,770
..we add the special olive oil
which Mama found.
686
01:03:32,895 --> 01:03:34,935
Hm? All right?
687
01:03:36,899 --> 01:03:38,899
There we go.
688
01:03:39,026 --> 01:03:40,686
Deirdre.
689
01:03:40,819 --> 01:03:43,819
All right, Lorenzo. Here we go.
690
01:04:09,598 --> 01:04:14,768
- There we go.
- You did good, buddy boy. Real good.
691
01:04:14,895 --> 01:04:19,355
Your Aunt Deirdre means "well", darling.
In this house, we cherish our adverbs.
692
01:04:19,483 --> 01:04:23,153
I expect you to do the same
when you get your voice back.
693
01:04:58,731 --> 01:05:00,771
(phone rings)
694
01:05:03,902 --> 01:05:06,992
- Hello?
- Mrs Odone, this is Dr Nikolais's office.
695
01:05:07,114 --> 01:05:11,664
I have Lorenzo's results. There's been a
small drop in the saturated C24 and 26.
696
01:05:11,785 --> 01:05:13,905
- About 15 per cent.
- 15 per cent?
697
01:05:14,038 --> 01:05:18,458
Dr Nikolais said not to get carried away.
It could be a spontaneous variation.
698
01:05:18,584 --> 01:05:22,554
- Am I allowed a tiny squeak of joy?
- We'll know more next month.
699
01:05:22,671 --> 01:05:23,881
Thank you.
700
01:05:45,069 --> 01:05:47,109
(choking)
701
01:05:47,946 --> 01:05:49,946
Michaela!
702
01:05:51,950 --> 01:05:53,990
(Lorenzo gasps for breath)
703
01:05:56,121 --> 01:05:58,831
Augusto! Get something
to hold down his tongue!
704
01:05:58,957 --> 01:06:00,957
- (Lorenzo wails)
- Oh, my baby!
705
01:06:09,259 --> 01:06:13,309
So, this is a kind of seizure,
like epilepsy?
706
01:06:13,430 --> 01:06:18,020
No, not a seizure. It's a paroxysm.
It's triggered by saliva in the windpipe.
707
01:06:18,143 --> 01:06:20,443
- But we suction him.
- Regularly.
708
01:06:20,562 --> 01:06:23,612
I know, but even so, some saliva
gets caught in the trachea.
709
01:06:23,732 --> 01:06:26,612
In any other child,
a cough would get rid of it.
710
01:06:26,735 --> 01:06:29,605
In Lorenzo, it becomes
a scrambled chain of reflexes...
711
01:06:29,738 --> 01:06:32,988
..that amplifies into
what you have just seen.
712
01:06:33,117 --> 01:06:35,907
If this happens again,
what can we do about it?
713
01:06:36,036 --> 01:06:38,286
Just help him try to ride it out.
714
01:06:39,164 --> 01:06:42,714
We're all flying blind here, folks.
The best I can offer is sedation.
715
01:06:42,876 --> 01:06:48,666
But if it's not epilepsy, then he's aware
of what's happening while it's going on?
716
01:06:48,799 --> 01:06:50,839
Well, it's possible.
717
01:06:51,593 --> 01:06:55,683
And if he has another episode,
we could talk him through it.
718
01:06:55,806 --> 01:06:57,926
It's possible, Michaela.
719
01:06:58,100 --> 01:07:00,140
It's possible.
720
01:07:02,354 --> 01:07:06,034
- Sì, sì. A 50 per cent drop, right?
- That's correct.
721
01:07:06,150 --> 01:07:08,030
Thank you very much. Thank you!
722
01:07:08,193 --> 01:07:10,453
Fantastico! Fantastico!
723
01:07:21,290 --> 01:07:26,250
I very well understand that we are not
scientists, but we have observed this...
724
01:07:26,378 --> 01:07:30,878
(Nikolais) Let us do it our way,
Augusto. Trust us.
725
01:07:31,008 --> 01:07:33,088
- I've got to go.
- OK. Thank you.
726
01:07:33,218 --> 01:07:34,678
Goodbye.
727
01:07:34,803 --> 01:07:39,103
- Nikolais says it's very interesting.
- Interesting? A 50 per cent drop?
728
01:07:39,224 --> 01:07:42,984
But it's too early to draw a conclusion.
Rizzo might consider a trial.
729
01:07:43,103 --> 01:07:46,363
And he asked us
not to tell the other parents.
730
01:07:46,482 --> 01:07:49,152
- What?!
- It's immoral. Something finally...
731
01:07:49,276 --> 01:07:52,776
- The parents have to know.
- We'll tell them. They can judge.
732
01:07:52,946 --> 01:07:56,526
- The foundation has a mailing list.
- We'll call the Muscatines.
733
01:07:56,659 --> 01:07:59,749
I can eat crow
in the name of a good cause.
734
01:08:02,623 --> 01:08:04,673
Michaela...
735
01:08:07,628 --> 01:08:12,298
Mm! Delicious! That was worth
driving 300 miles for.
736
01:08:12,466 --> 01:08:16,346
- Now, my friends... dessert.
- Here, let me move this.
737
01:08:17,513 --> 01:08:20,353
And Loretta... a little science, hm?
738
01:08:21,183 --> 01:08:23,233
Thank you.
739
01:08:24,144 --> 01:08:26,194
"Dear ALD parents..."
740
01:08:35,114 --> 01:08:39,334
- You want us to send this out?
- Yes. We'll pay for copying and postage.
741
01:08:39,994 --> 01:08:42,044
But you're advocating a therapy.
742
01:08:42,162 --> 01:08:46,672
No, we're merely reporting
a positive advancement in the diet.
743
01:08:46,792 --> 01:08:49,422
It would be wrong to keep it
from the other parents.
744
01:08:49,545 --> 01:08:53,625
Mrs Odone, we have an advisory board
of eminent doctors...
745
01:08:53,757 --> 01:08:55,877
..and we take our guidance from them.
746
01:08:56,010 --> 01:08:58,390
They are the ones
with the medical degrees.
747
01:08:58,512 --> 01:09:02,392
Yes, my dear, but Nikolais
already knows about this...
748
01:09:02,516 --> 01:09:06,976
- ..and the wretched man does nothing.
- Because he is a responsible scientist.
749
01:09:07,104 --> 01:09:11,824
- No, because he has another agenda.
- All right, Michaela. Calmati, calmati.
750
01:09:11,942 --> 01:09:14,362
You know, Loretta, sometimes...
751
01:09:15,738 --> 01:09:21,288
..the interest of the scientists is not
the same as the interest of the parents.
752
01:09:21,410 --> 01:09:25,540
Scientists are human
and sometimes they can be wrong.
753
01:09:25,664 --> 01:09:31,134
As president of the foundation,
you represent us, the families.
754
01:09:31,253 --> 01:09:36,223
And you serve the families best
by informing them.
755
01:09:36,342 --> 01:09:41,722
And all we ask is that you please
send this letter to them, that's all.
756
01:09:41,847 --> 01:09:47,687
Our parents suffer enough without
being made the victims of false hopes.
757
01:09:47,811 --> 01:09:52,021
We can't give credence to every jerk
with a pocketful of apricot seeds.
758
01:09:52,149 --> 01:09:56,109
Excuse me, this is not Laetrile. We're
talking about an extract of olive oil,...
759
01:09:56,278 --> 01:09:59,698
..an idea that was put forth
by the scientists at the symposium.
760
01:09:59,823 --> 01:10:01,873
And it works in Lorenzo.
761
01:10:01,992 --> 01:10:05,542
It works in an ALD boy
to a degree that is significant.
762
01:10:05,663 --> 01:10:10,543
- Very significant.
- Other parents have a right to know.
763
01:10:11,085 --> 01:10:15,455
We know that this is a deadly disease,
so they have a right to choice.
764
01:10:15,631 --> 01:10:19,511
And if they feel as we do,
they can put pressure on the doctors.
765
01:10:19,718 --> 01:10:24,468
Because, as parents, we should
challenge these guys. We push them.
766
01:10:24,598 --> 01:10:31,558
Unless someone is willing to question,
to provoke, how would there be progress?
767
01:10:31,689 --> 01:10:33,649
Well, we feel there is progress.
768
01:10:33,774 --> 01:10:38,704
Loretta, we know that, but all we say is
start a dialectic with the doctors.
769
01:10:38,821 --> 01:10:40,701
Are you telling us what to do?
770
01:10:40,823 --> 01:10:43,163
We're asking you
to disseminate information.
771
01:10:43,283 --> 01:10:46,703
You gonna teach the doctors?
Where we come from, that's arrogance.
772
01:10:46,829 --> 01:10:49,119
- Arrogance!
- Yes.
773
01:10:49,289 --> 01:10:51,539
It is... arrogance.
774
01:10:52,251 --> 01:10:56,801
It comes from the Latin word... arrogare.
775
01:10:56,922 --> 01:10:59,932
You know it? You know
the root? What it means?
776
01:11:00,050 --> 01:11:03,680
It means to claim for oneself.
777
01:11:03,804 --> 01:11:07,934
That's the root.
It means to claim for oneself.
778
01:11:09,143 --> 01:11:13,443
And I claim the right
to fight for my kid's life.
779
01:11:13,564 --> 01:11:19,284
And no doctor, no researcher, no bloody
foundation, has the right to stop me...
780
01:11:19,403 --> 01:11:22,663
..from asking questions
which might help me save him!
781
01:11:23,032 --> 01:11:27,372
And you have no right to stop
the sharing of information!
782
01:11:27,494 --> 01:11:30,754
- So you think about it!
- Our job is to be there for the parents.
783
01:11:30,873 --> 01:11:33,293
To comfort them,
not to get them stirred up.
784
01:11:33,417 --> 01:11:37,587
If the doctors think you have something,
they will tell us in their own good time.
785
01:11:37,713 --> 01:11:41,763
- Their own good time is not our time.
- What? They are so powerful...
786
01:11:41,884 --> 01:11:45,144
They are so powerful
that you would be silent?
787
01:11:45,304 --> 01:11:47,104
They are not gods!
788
01:11:47,222 --> 01:11:50,642
Do you know, this acquiescence
is so disgusting!
789
01:11:50,768 --> 01:11:53,268
You think you know so much.
Let me tell you something!
790
01:11:53,437 --> 01:11:57,107
When Michael got sick, we looked for
anything that might help him.
791
01:11:57,232 --> 01:12:00,112
And the best thing that happened?
He was taken quickly.
792
01:12:00,235 --> 01:12:03,905
Now, Tommy... he has lasted three years.
793
01:12:04,031 --> 01:12:06,951
For two of 'em, he's been
without his sight, his mind,...
794
01:12:07,076 --> 01:12:11,206
..everything that makes him
a human being. He's a vegetable!
795
01:12:13,374 --> 01:12:18,304
Oh, boy! If you would stop all this denial,
you wouldn't do a thing...
796
01:12:18,420 --> 01:12:23,380
..to prolong your boy's suffering
and indignity one minute longer.
797
01:12:31,767 --> 01:12:36,897
Has it occurred to you that maybe
he doesn't want to be around any more?
798
01:12:38,565 --> 01:12:40,605
Sì, sì. Thank you.
799
01:12:48,409 --> 01:12:50,489
It has to be a mistake.
800
01:12:50,619 --> 01:12:53,749
No, Nikolais says not.
801
01:12:53,872 --> 01:12:56,132
- Augusto...
- Oh, sorry.
802
01:12:58,585 --> 01:13:02,045
- Should we risk raising the dose?
- No, he's too fragile.
803
01:13:02,172 --> 01:13:04,592
Any more might harm his liver.
804
01:13:16,020 --> 01:13:18,060
(bell rings)
805
01:13:29,616 --> 01:13:32,406
- (Lorenzo screaming)
- Lorenzo, listen to Mommy.
806
01:13:32,536 --> 01:13:35,496
You're going to have to be brave
as only you know how.
807
01:13:35,622 --> 01:13:38,172
We're gonna count together,
you and I, all right?
808
01:13:38,334 --> 01:13:41,804
Listen to Mommy's voice
and the boo-boo will let go of you.
809
01:13:41,920 --> 01:13:43,960
One, two,...
810
01:13:44,631 --> 01:13:46,841
..three, four...
811
01:14:07,655 --> 01:14:09,695
Michaela...
812
01:14:11,367 --> 01:14:16,617
You know, I've been a nurse for 18 years,
eight of them spent in ICU paediatrics.
813
01:14:16,747 --> 01:14:20,877
And I know that you can't always
play by the rules, but...
814
01:14:21,043 --> 01:14:22,883
..this boy shouldn't be at home.
815
01:14:23,087 --> 01:14:27,417
He should be placed
in a properly equipped hospital.
816
01:14:28,926 --> 01:14:31,216
Why don't you say what you mean?
817
01:14:31,345 --> 01:14:34,055
I'm not comfortable with this situation.
818
01:14:35,307 --> 01:14:40,227
Well, Lorenzo and I aren't comfortable
with your lack of comfort.
819
01:14:41,438 --> 01:14:44,268
I can't continue to be a party to this.
820
01:14:45,943 --> 01:14:48,453
I gotta give you my notice.
I'll stay until...
821
01:14:48,612 --> 01:14:51,452
- No, you should finish tonight.
- Michaela! Go easy.
822
01:14:51,573 --> 01:14:55,413
Your agency will receive
a cheque in the morning.
823
01:14:55,577 --> 01:14:59,157
Look, Ruth. We're all
a little strung-out here.
824
01:14:59,289 --> 01:15:03,959
She's talking about placement, Deirdre.
It's a euphemism for "hospice".
825
01:15:04,086 --> 01:15:08,256
Lorenzo has enough to endure. We will
not expose ourself to doubt and despair.
826
01:15:08,382 --> 01:15:11,092
She's exhausted. That's all it is.
827
01:15:11,218 --> 01:15:15,388
Look, I don't know.
Somebody had to say something.
828
01:15:15,514 --> 01:15:17,564
Good luck.
829
01:16:12,821 --> 01:16:15,201
Buonasera, Odone.
830
01:16:15,324 --> 01:16:17,534
Look what I found.
831
01:16:17,660 --> 01:16:20,200
Look at this. Would you look at this!
832
01:16:22,164 --> 01:16:24,174
Let me show you.
833
01:16:25,167 --> 01:16:27,377
Where are we? Right here.
834
01:16:31,590 --> 01:16:35,180
That was June of '83, just 21 months ago.
835
01:16:42,184 --> 01:16:46,774
You know, it's time you guys
take it easy on yourselves.
836
01:16:46,897 --> 01:16:48,937
Deirdre...
837
01:16:50,317 --> 01:16:53,567
If we knew why it only work halfway,...
838
01:16:55,447 --> 01:16:58,737
..then we might know what to do next.
839
01:16:58,909 --> 01:17:03,329
Augusto, how many mornings
have I found you asleep...
840
01:17:03,455 --> 01:17:06,955
..under a pile of research papers
with the lights still on?
841
01:17:07,126 --> 01:17:10,586
And then you wake up
and drag yourself into the office.
842
01:17:10,713 --> 01:17:12,673
How long can you keep this up?
843
01:17:12,798 --> 01:17:16,048
If you get sick - and you will -
what are you gonna do for money?
844
01:17:16,135 --> 01:17:19,805
What are you telling me?
For God's sake, he is my kid.
845
01:17:19,930 --> 01:17:25,940
Yeah, so are Cristina and Francesco, and
it's been a year since you've seen them.
846
01:17:26,061 --> 01:17:28,111
Listen to me, OK?
847
01:17:30,399 --> 01:17:33,899
There has to be a life beyond Lorenzo.
848
01:17:35,070 --> 01:17:38,240
What are you telling me?
That I should give up on this now?
849
01:17:38,365 --> 01:17:42,075
Oh, man. We both know that even if
you get his levels down to normal,...
850
01:17:42,202 --> 01:17:44,292
..his brain can't fix itself.
851
01:17:44,413 --> 01:17:48,083
How much myelin does he have left?
Do you ever ask yourself that?
852
01:17:48,208 --> 01:17:52,588
- Deirdre, now that's enough.
- No. Don't bullshit me.
853
01:17:52,713 --> 01:17:56,223
I know you do... but she doesn't.
854
01:17:57,718 --> 01:17:59,758
Not ever.
855
01:18:00,929 --> 01:18:05,679
You have to help me with her.
She doesn't eat, she doesn't sleep.
856
01:18:06,769 --> 01:18:09,859
I'm afraid for her.
I think she's losing it.
857
01:18:11,523 --> 01:18:15,743
You've seen how she is with him.
She just can't let him go.
858
01:18:15,861 --> 01:18:17,911
Poor Deirdre.
859
01:18:18,656 --> 01:18:22,076
Spoken as only a woman who's
never had a child could speak.
860
01:18:22,242 --> 01:18:25,202
Michaela, Deirdre was
speaking out of love.
861
01:18:25,329 --> 01:18:27,789
I am only telling you what I see.
862
01:18:27,915 --> 01:18:31,915
For both your sakes,
there has to be life beyond Lorenzo.
863
01:18:32,044 --> 01:18:37,804
Do you think that he has no voice?
No will to live? He asserts it through us!
864
01:18:37,925 --> 01:18:40,505
If you can't see that,
there's no place for you here!
865
01:18:40,636 --> 01:18:43,966
Michaela, for God's sake,
she is your sister!
866
01:18:44,098 --> 01:18:49,018
- And I think you're losing it, Michaela.
- Well, then, I think you should go.
867
01:18:50,354 --> 01:18:53,524
Augusto, help her pack her bags.
I'm going back to our son.
868
01:18:57,903 --> 01:19:00,363
You think I'm crazy
because I speak for our son?!
869
01:19:13,627 --> 01:19:16,957
I am so sorry.
I never wanted this to happen.
870
01:19:17,089 --> 01:19:22,639
How can I? How can I enjoy
anything when he enjoys nothing?
871
01:19:22,761 --> 01:19:26,641
How can you talk to me about loving him
when you trivialise him into...
872
01:19:30,602 --> 01:19:32,562
No! No!
873
01:19:52,249 --> 01:19:54,629
- Mrs Odone!
- Get a tube.
874
01:19:54,752 --> 01:19:56,422
Do you have the tube?
875
01:19:56,545 --> 01:19:59,375
Don't nod, Nancy Jo. Say "yes".
My attention's on Lorenzo.
876
01:19:59,506 --> 01:20:02,926
Darling, look at me. Listen to
Mommy's voice. We're gonna count.
877
01:20:03,093 --> 01:20:05,973
- One, two, three, four...
- (Lorenzo screaming)
878
01:20:10,434 --> 01:20:12,484
(choking and crying)
879
01:20:23,989 --> 01:20:28,119
I'm sedating him as much as I dare.
I don't know what else to do.
880
01:20:38,712 --> 01:20:42,842
How can he endure this
for so many hours?
881
01:20:45,386 --> 01:20:47,426
Augusto...
882
01:20:48,389 --> 01:20:52,309
I don't think he'll have to
endure it much longer.
883
01:20:52,810 --> 01:20:54,520
(screaming)
884
01:21:01,527 --> 01:21:03,567
(choking and panting)
885
01:21:24,717 --> 01:21:28,097
Michaela, let me take him.
886
01:21:28,220 --> 01:21:30,600
- You need rest.
- I'm fine.
887
01:21:31,390 --> 01:21:33,850
I could use a cup of coffee, though.
888
01:21:43,027 --> 01:21:45,567
Lorenzo... Lorenzo, listen to Mama.
889
01:21:46,530 --> 01:21:48,660
Can you hear me, my darling?
890
01:21:48,782 --> 01:21:51,492
If this is too much for you,
my sweetheart,...
891
01:21:51,618 --> 01:21:56,288
..well then you fly, you fly
as fast as you can to baby Jesus.
892
01:21:59,168 --> 01:22:01,168
It's OK.
893
01:22:03,172 --> 01:22:05,422
Mama and Papa will be OK.
894
01:22:06,133 --> 01:22:08,183
(wailing)
895
01:22:44,713 --> 01:22:48,433
I have rarely seen anything
like this boy's tenacity.
896
01:22:53,305 --> 01:22:55,805
They have a bed available upstairs.
897
01:22:55,933 --> 01:22:58,393
No, no, no. In a hospice, no.
898
01:22:59,353 --> 01:23:01,273
It'd be easier. On everybody.
899
01:23:01,397 --> 01:23:04,227
But I would not do honour to Lorenzo.
900
01:23:23,043 --> 01:23:25,173
Michaela. Come.
901
01:23:25,295 --> 01:23:27,755
- What?
- Come. Come on.
902
01:23:27,923 --> 01:23:29,973
- Nurse.
- Yes.
903
01:23:39,852 --> 01:23:43,772
Now, today we eat, moglie mia,
every last mouthful.
904
01:23:43,897 --> 01:23:46,067
- I'm not hungry.
- No, no, no. You eat.
905
01:23:46,233 --> 01:23:47,283
Sit.
906
01:23:47,401 --> 01:23:50,531
Michaela, you sit. Sit.
907
01:23:50,654 --> 01:23:55,084
From tomorrow morning,
the Odones need all their energies.
908
01:23:55,200 --> 01:23:59,750
Now listen. We set out to
normalise Lorenzo's blood, right?
909
01:23:59,872 --> 01:24:05,882
And with the oleic oil, we got it
half-right, but that was luck.
910
01:24:06,003 --> 01:24:10,973
- It was rather more than luck.
- No, it was luck. Merely observation.
911
01:24:11,091 --> 01:24:14,091
Rizzo observed something
in a test tube, right?
912
01:24:14,219 --> 01:24:16,389
We tried it on Lorenzo.
913
01:24:16,513 --> 01:24:19,933
Rizzo observed
a 50 per cent drop in fibroblasts.
914
01:24:20,059 --> 01:24:23,149
We observed
a 50 per cent drop in Lorenzo.
915
01:24:24,563 --> 01:24:28,783
Michaela, that is luck.
That is observation.
916
01:24:28,901 --> 01:24:33,241
That is all it is.
It is not understanding.
917
01:24:33,364 --> 01:24:36,834
And until we understand
why this work only halfway,...
918
01:24:36,950 --> 01:24:40,870
..how can we expect
to succeed all the way?
919
01:24:41,038 --> 01:24:45,578
I need to understand, Michaela.
You need to understand.
920
01:24:46,627 --> 01:24:49,757
So, tomorrow we go back to the library.
921
01:24:50,506 --> 01:24:55,546
No, no, no. We review all the literature,
everything on fatty-acid metabolism,...
922
01:24:55,678 --> 01:24:58,218
..every word published in the last decade.
923
01:24:58,347 --> 01:25:00,677
So, eat. You eat.
924
01:25:00,808 --> 01:25:04,138
Whatever energy or time I have left
I want to spend with Lorenzo.
925
01:25:04,269 --> 01:25:06,979
You will not have to leave him.
I will go to the library.
926
01:25:07,106 --> 01:25:09,476
I make copies for you,
I bring it home for you.
927
01:25:09,608 --> 01:25:13,358
Augusto, we are on our second mortgage.
You can't afford not to go to work.
928
01:25:13,487 --> 01:25:16,987
Michaela, I will work.
I'll fit it in somehow.
929
01:25:18,283 --> 01:25:22,203
Michaela, this is important. I need you.
930
01:25:24,832 --> 01:25:26,832
I need you, Michaela.
931
01:25:28,585 --> 01:25:30,335
So eat.
932
01:25:49,481 --> 01:25:52,861
Brava! Bravissima! Bravissima!
933
01:26:00,534 --> 01:26:02,624
(sighs)
934
01:26:14,965 --> 01:26:17,005
Betty! Betty!
935
01:26:17,968 --> 01:26:22,218
All these fatty-acid studies concentrate
on the middle of the chain...
936
01:26:22,348 --> 01:26:26,188
..because the medium-chain saturates
are implicated in cholesterol.
937
01:26:26,310 --> 01:26:29,810
So what do these researchers do?
Think cholesterol, cholesterol.
938
01:26:29,980 --> 01:26:33,070
C12. C14, C-bloody-16!
939
01:26:33,233 --> 01:26:36,573
- Augusto, what are you looking for?
- I am looking...
940
01:26:36,695 --> 01:26:41,025
- ..for the long end of fatty-acid chains!
- All right. Write it down for me.
941
01:26:41,158 --> 01:26:44,288
These researchers should be
doing something about this.
942
01:26:44,453 --> 01:26:46,793
- Write it down.
- Long-chain fatty acids.
943
01:26:46,914 --> 01:26:50,674
C18 through C26.
944
01:26:51,335 --> 01:26:53,125
Saturated.
945
01:26:53,253 --> 01:26:55,673
Monounsaturated, OK?
946
01:26:55,798 --> 01:26:58,928
OK. Now I want you to go off to lunch.
947
01:26:59,051 --> 01:27:03,181
Have yourself a good lunch
and I'm gonna see what I can do.
948
01:27:13,774 --> 01:27:16,074
This is the best I could do
at short notice.
949
01:27:16,193 --> 01:27:19,783
One article from a veterinary
science journal about pigs.
950
01:27:19,905 --> 01:27:24,155
- But it's on your long-chain fats.
- Well, thank you, Betty.
951
01:27:24,284 --> 01:27:27,294
Listen, I am very sorry about...
952
01:27:27,413 --> 01:27:30,293
Oh, well, you're Italian.
953
01:27:34,294 --> 01:27:38,844
- (coughing and wheezing)
- (Michaela) ..72, 73, 74...
954
01:27:38,966 --> 01:27:43,176
That's it. 75, 76,...
955
01:27:44,054 --> 01:27:47,394
..77, 78...
956
01:27:47,975 --> 01:27:50,225
Nice going, Mrs Odone.
957
01:27:51,312 --> 01:27:55,362
That's it, my love. You know
only the strongest, bravest boy,...
958
01:27:55,482 --> 01:27:59,242
..only a very special person
like you is chosen to fight the boo-boo.
959
01:27:59,361 --> 01:28:01,951
I'll give him a little water, OK? 20cc's?
960
01:28:02,072 --> 01:28:03,162
Yes.
961
01:28:03,282 --> 01:28:08,412
And, Nancy Jo, why don't you tell Lorenzo
what an excellent job he did?
962
01:28:08,537 --> 01:28:10,867
An excellent job you did, Lorenzo.
963
01:28:11,040 --> 01:28:16,420
Sometimes I wonder, my love, if people
realise how incredible you truly are.
964
01:28:26,096 --> 01:28:28,636
Oh, thank you. Thank you very much.
965
01:28:30,142 --> 01:28:32,522
Is this a new hobby or a nervous tic?
966
01:28:35,230 --> 01:28:38,610
No, this is a simple mind at work,
that's all.
967
01:28:38,734 --> 01:28:43,114
See, each paperclip, Deirdre,
is two carbon atom, right?
968
01:28:43,238 --> 01:28:44,948
- Oh, God!
- No, no, no.
969
01:28:45,074 --> 01:28:47,414
Really is two carbon atom, all right?
970
01:28:47,576 --> 01:28:51,326
So we have C2, C4, C6, you know?
971
01:28:51,497 --> 01:28:54,497
Now, here's what I try to do.
I try to make a chain,...
972
01:28:54,708 --> 01:28:58,588
..a very long chain
of monounsaturated fats.
973
01:28:58,712 --> 01:29:02,342
- This is the good guys, right?
- OK, what are these? The bad guys?
974
01:29:02,466 --> 01:29:05,006
Yes. These here...
975
01:29:05,135 --> 01:29:07,755
..is the bad guys, all right?
976
01:29:07,888 --> 01:29:10,018
Now, Deirdre, what I'm trying to do...
977
01:29:10,140 --> 01:29:12,560
I try to understand the relationship...
978
01:29:12,685 --> 01:29:15,765
..between the good guys
and the bad guys.
979
01:29:16,146 --> 01:29:19,066
So, OK, I am the enzyme, right?
980
01:29:19,191 --> 01:29:24,611
And I reach out and grab a carbon atom
and I put it on my chain, right?
981
01:29:24,738 --> 01:29:26,198
Here is my chain.
982
01:29:26,365 --> 01:29:29,115
Now, here, you be
the bad-guy enzyme, OK?
983
01:29:29,243 --> 01:29:33,003
No, no. Do this for me.
You be bad-guy enzyme, all right?
984
01:29:33,122 --> 01:29:34,622
Take this, all right?
985
01:29:34,748 --> 01:29:39,958
Now you reach out and grab a carbon
atom and put it on your bad-guy chain.
986
01:29:40,087 --> 01:29:42,507
I had enough trouble
with the kitchen sink.
987
01:29:42,673 --> 01:29:47,473
No, no. You just do this and
then I explain, OK? All right.
988
01:29:47,594 --> 01:29:53,314
So let's each start now
making our chains.
989
01:29:53,434 --> 01:29:57,984
OK? All right? Do another one.
That's good, Deirdre.
990
01:29:58,105 --> 01:30:00,225
Good. We put another one on...
991
01:30:00,357 --> 01:30:04,187
- Here's the stuff on enzyme complexes.
- Ah, thank you. Mille grazie.
992
01:30:04,320 --> 01:30:06,240
- Prego.
- Prego! Very good.
993
01:30:06,363 --> 01:30:08,823
- Now, did you make the extra copies?
- Oh, you bet.
994
01:30:08,949 --> 01:30:11,409
- Thank you very much.
- For Michaela? How is she?
995
01:30:11,535 --> 01:30:12,995
She's fine.
996
01:30:13,078 --> 01:30:17,748
So here we are. We're making our chains
more or less the same rate, right?
997
01:30:17,875 --> 01:30:20,085
That's as one would expect, right?
998
01:30:20,210 --> 01:30:23,510
But, now, Deirdre, if we were enzymes...
999
01:30:23,631 --> 01:30:27,221
..in the bodies of little rats
and little pigs and Lorenzo,...
1000
01:30:27,343 --> 01:30:31,263
..then the faster I go,
the more you slow down.
1001
01:30:32,139 --> 01:30:34,519
Now, why would that be?
1002
01:30:34,642 --> 01:30:40,402
Why, the faster I go, would you slow
down, if we are both separate enzymes?
1003
01:30:40,564 --> 01:30:45,444
It means that there has to be
some kind of relationship going on.
1004
01:30:45,569 --> 01:30:49,989
We affect each other some way.
There's some kind of interplay.
1005
01:30:50,115 --> 01:30:52,695
But what is it?
1006
01:30:52,868 --> 01:30:54,908
What is it?
1007
01:30:58,415 --> 01:31:00,455
(Michaela) One, two,...
1008
01:31:01,210 --> 01:31:03,630
..three, four,...
1009
01:31:04,505 --> 01:31:07,215
..five, six,...
1010
01:31:07,758 --> 01:31:09,428
..seven candles.
1011
01:31:09,551 --> 01:31:12,391
And Mommy will blow them out for you.
1012
01:31:12,513 --> 01:31:14,563
Make a wish.
1013
01:31:31,991 --> 01:31:34,031
(Lorenzo murmurs)
1014
01:31:40,874 --> 01:31:43,964
(Lorenzo recites random numbers
in Italian)
1015
01:31:55,055 --> 01:31:57,885
Michaela! They are the same enzyme!
1016
01:31:58,017 --> 01:32:03,147
There is one enzyme for both chains.
It's the same bloody enzyme!
1017
01:32:03,272 --> 01:32:06,862
So if we keep the enzyme busy
making monounsaturates...
1018
01:32:06,984 --> 01:32:09,574
It distracts it from
elongating the saturates.
1019
01:32:09,695 --> 01:32:12,355
Right! So we have a way to trick nature.
1020
01:32:12,489 --> 01:32:15,619
Yes, it's a principle called
"competitive inhibition".
1021
01:32:15,743 --> 01:32:19,003
So, Gus, do you think
it's a reasonable hypothesis?
1022
01:32:19,121 --> 01:32:23,541
I think it's more. You've clarified
the biochemical pathway.
1023
01:32:23,667 --> 01:32:26,417
Augusto, I really want
to congratulate you.
1024
01:32:26,587 --> 01:32:31,007
This would explain why oleic acid
is only partly successful.
1025
01:32:31,133 --> 01:32:34,973
Yes, it's C18, you see.
It's too low down in the chain.
1026
01:32:35,095 --> 01:32:39,515
So we add a second barrier. We block
the bad guys further up the chain,...
1027
01:32:39,642 --> 01:32:43,942
..the saturates further up the chain,
between C22 and C24.
1028
01:32:44,063 --> 01:32:46,323
There we stop
the bloody things completely.
1029
01:32:46,440 --> 01:32:50,240
- And how would you do that?
- By adding monounsaturated C22.
1030
01:32:50,361 --> 01:32:53,161
- That's erucic acid.
- Yes, exactly.
1031
01:32:53,822 --> 01:32:55,872
Erm...
1032
01:32:55,991 --> 01:32:57,831
- Martha?
- Yes, Doctor?
1033
01:32:57,993 --> 01:33:03,253
Among our animal studies,
you will find a file on erucic acid.
1034
01:33:03,374 --> 01:33:06,174
With an e... r-u-c-i-c.
1035
01:33:06,335 --> 01:33:08,375
- OK.
- Thank you.
1036
01:33:09,296 --> 01:33:11,876
You don't believe it will work?
1037
01:33:12,007 --> 01:33:17,347
I think what you have done is postulate a
theory that could be of enormous benefit.
1038
01:33:17,513 --> 01:33:22,103
But, as for erucic acid,
it creates cardiac problems in rats.
1039
01:33:22,893 --> 01:33:26,733
If it's not safe for rats, I don't know
what justification there can be...
1040
01:33:26,855 --> 01:33:30,855
..for using it as a therapy on humans.
1041
01:33:30,985 --> 01:33:32,815
But Gus, Gus,...
1042
01:33:32,945 --> 01:33:36,905
..erucic acid is the chief component
in rapeseed oil, right?
1043
01:33:37,032 --> 01:33:40,582
Rapeseed oil is a common food
in China and India.
1044
01:33:40,703 --> 01:33:43,713
And their rate of heart disease
is far lower than here.
1045
01:33:43,831 --> 01:33:47,631
All right, look at these documents.
Cardiac lipidosis,...
1046
01:33:47,751 --> 01:33:52,051
..myocardial lesions, cholesterol
deposits in the adrenal gland...
1047
01:33:52,172 --> 01:33:55,182
..and damage to the reproductive system.
1048
01:33:55,301 --> 01:33:59,011
I'm afraid the weight of evidence
is much too great.
1049
01:33:59,138 --> 01:34:01,768
And no human-studies
review committee...
1050
01:34:01,890 --> 01:34:06,100
..will ever do anything but discard
erucic acid out of hand.
1051
01:34:06,312 --> 01:34:10,692
But the human studies
have been accomplished by history.
1052
01:34:10,816 --> 01:34:15,276
They have been eating the stuff
in these countries for thousands of years.
1053
01:34:15,487 --> 01:34:19,367
You can't expect me to start a protocol
based on that kind of assertion.
1054
01:34:19,491 --> 01:34:21,741
You should examine your protocol...
1055
01:34:21,869 --> 01:34:25,539
..when children are dying and
find a way to research these...
1056
01:34:25,706 --> 01:34:29,626
- It's common sense.
- We simply have a contradiction.
1057
01:34:29,793 --> 01:34:33,713
We seek more information. We do not
dismiss erucic acid out of hand.
1058
01:34:33,881 --> 01:34:38,341
Michaela, if I ignore all this evidence...
1059
01:34:38,469 --> 01:34:42,309
..and we embark on a therapy
based on erucic acid...
1060
01:34:44,058 --> 01:34:47,058
Something goes wrong. What then?
1061
01:34:47,645 --> 01:34:52,185
Well, then I suppose the risk-reward
ratio is too unattractive for you.
1062
01:34:52,858 --> 01:34:54,898
I beg your pardon?
1063
01:34:56,070 --> 01:34:59,570
The life of one boy
is not enough reward for you...
1064
01:34:59,698 --> 01:35:04,948
..to risk the reputation of the institution
and the esteem of your peers.
1065
01:35:06,622 --> 01:35:12,252
That was uncalled for. Your responsibility
is merely towards your own child.
1066
01:35:12,378 --> 01:35:17,418
My responsibility is towards all the boys
that suffer from this disease,...
1067
01:35:17,549 --> 01:35:19,719
..now and in the future.
1068
01:35:20,761 --> 01:35:24,351
Of course I anguish for
the suffering of your boy.
1069
01:35:25,182 --> 01:35:29,812
And of course I applaud you for
the efforts you make on his behalf.
1070
01:35:30,688 --> 01:35:33,768
But I will have nothing to do
with this oil.
1071
01:35:34,984 --> 01:35:40,114
We are not asking, Doctor,
for your anguish or your applause.
1072
01:35:40,239 --> 01:35:43,329
We are asking merely for a little courage.
1073
01:35:48,497 --> 01:35:50,537
OK. All right.
1074
01:35:55,462 --> 01:36:01,142
(Augusto) No, whatever the doctors say,
reason tells us it is a risk worth taking.
1075
01:36:01,302 --> 01:36:05,562
But, my friend, we need
a sympathetic collaborator, hm?
1076
01:36:05,681 --> 01:36:09,181
If it was in my hands, I would do
anything I could to help, Mr Odone.
1077
01:36:09,310 --> 01:36:11,350
I have a boy of my own.
1078
01:36:12,229 --> 01:36:14,229
But I don't like our chances.
1079
01:36:14,356 --> 01:36:19,276
You know, they said the same thing
about the oleic acid, and here it was,...
1080
01:36:19,403 --> 01:36:23,163
- ..sitting right on the shelf.
- This is a whole other ball game.
1081
01:36:23,282 --> 01:36:27,412
Extracting the saturated C24 and 26
from rapeseed oil...
1082
01:36:27,536 --> 01:36:30,786
It's very tricky. It would take
our best chemist at least a year.
1083
01:36:30,914 --> 01:36:36,594
And then you would never get it past the
FDA. Erucic acid for human consumption?
1084
01:36:36,712 --> 01:36:40,922
I'm sorry, but no one in the country
is gonna touch it.
1085
01:36:41,050 --> 01:36:44,430
Well, what about
outside this country, hm?
1086
01:36:44,553 --> 01:36:46,683
Uh, I wouldn't know where to send you.
1087
01:36:46,805 --> 01:36:51,725
Oh, Mr Pellerman! We're agents
for over a dozen foreign companies.
1088
01:36:51,852 --> 01:36:53,812
There must be one that could help.
1089
01:36:53,937 --> 01:36:57,187
Maybe all we need to do is look
at the list of the foreign companies.
1090
01:36:57,316 --> 01:37:00,356
No, you and your wife
have enough to do.
1091
01:37:00,527 --> 01:37:05,237
I'm sure Mr Pellerman would be happy
to make the calls for you.
1092
01:37:09,370 --> 01:37:11,160
We'd have to be covered, legally.
1093
01:37:11,288 --> 01:37:15,668
If anything goes wrong, this company
is not going to be held liable.
1094
01:37:15,834 --> 01:37:19,054
Oh, we would not hold you liable. No, no.
1095
01:37:19,171 --> 01:37:25,181
And this... It would be greatly
appreciated if we could circulate this.
1096
01:37:29,848 --> 01:37:34,808
"The interplay of monounsaturated
and saturated fatty acids:
1097
01:37:34,937 --> 01:37:38,107
..therapeutic application in ALD."
1098
01:37:38,232 --> 01:37:39,782
- Wow.
- You wrote this?
1099
01:37:39,900 --> 01:37:43,570
Yes. We felt that
if we were asking for help,...
1100
01:37:43,696 --> 01:37:47,026
..our rationale needs to be very clear.
1101
01:37:47,157 --> 01:37:52,787
(Yorkshireman) We've all read your paper.
It's a beautiful piece of biochemistry.
1102
01:37:52,913 --> 01:37:56,173
(Augusto) Over a hundred companies
all say "too difficult".
1103
01:37:56,291 --> 01:37:59,881
Well, my first impression
was that it's bloody impossible.
1104
01:38:00,004 --> 01:38:03,844
But I've been doing difficult
fractionations for 40 years...
1105
01:38:03,966 --> 01:38:07,716
- ..and I'd like to have a stab at it.
- How long do you think, Mr Suddaby?
1106
01:38:07,845 --> 01:38:11,715
I've only six months
before I retire, so we'll see.
1107
01:38:11,849 --> 01:38:17,019
All right. Then I'll let you get on with it.
Call me if you have any questions.
1108
01:38:17,146 --> 01:38:19,186
Righto. Bye, then.
1109
01:38:38,917 --> 01:38:40,957
(knock on door)
1110
01:38:41,545 --> 01:38:43,585
Who could this be?
1111
01:38:47,343 --> 01:38:49,683
Ah, your good friend Wendy...
1112
01:38:49,803 --> 01:38:53,643
..with all sorts of lovely
vegetables and fruits.
1113
01:38:54,350 --> 01:38:56,350
- Hi, Michaela.
- Look what you brought us!
1114
01:38:56,518 --> 01:38:58,398
Hi, Lorenzo.
1115
01:38:58,562 --> 01:39:00,522
Jake's not in school today?
1116
01:39:00,689 --> 01:39:02,729
He's not feeling so good.
1117
01:39:05,152 --> 01:39:09,532
I'm going for a walk with Mrs Gimble
and we shall be back shortly.
1118
01:39:09,698 --> 01:39:13,118
I've given him his oxcarbazepine
and 15ml of water.
1119
01:39:13,994 --> 01:39:18,004
- Do you want me to do anything else?
- I'm sure he would love a story.
1120
01:39:18,123 --> 01:39:20,583
Do you have a problem with this?
1121
01:39:23,003 --> 01:39:24,963
Fine.
1122
01:39:31,387 --> 01:39:35,137
- He's had a couple of tantrums.
- Oh, I'm sorry.
1123
01:39:35,307 --> 01:39:37,347
It's OK.
1124
01:39:38,227 --> 01:39:42,357
- Dr Rizzo got him in the oleic acid trial.
- That's good.
1125
01:39:47,736 --> 01:39:49,776
Hi, Jake.
1126
01:39:51,281 --> 01:39:54,451
Hi, sweetie.
Thank you for my potatoes.
1127
01:39:56,829 --> 01:39:58,869
Say hello, son.
1128
01:40:01,625 --> 01:40:04,125
(weakly) Hi, Mrs...
1129
01:40:04,253 --> 01:40:07,343
..Odone.
1130
01:40:16,765 --> 01:40:19,845
He saw the way Jaybird went.
1131
01:40:20,728 --> 01:40:23,188
He knows what's in store for him.
1132
01:40:29,320 --> 01:40:32,160
(flatly) "They forgot their hunger
and followed the bird."
1133
01:40:32,281 --> 01:40:34,331
"They came to an opening in the forest."
1134
01:40:34,450 --> 01:40:38,830
"Before them was a little cottage,
gleaming in the rays of the setting sun."
1135
01:40:38,954 --> 01:40:42,924
"'Look, Gretel' exclaimed Hansel.
'That cottage is made of gingerbread."'
1136
01:40:43,042 --> 01:40:46,382
"'It really is' replied Gretel,
running up and tasting a bit...
1137
01:40:46,545 --> 01:40:48,455
..that she had pulled from the wall."
1138
01:40:48,631 --> 01:40:51,181
"'And the roof is shingled
with butterscotch."'
1139
01:40:51,300 --> 01:40:55,390
"'The windowsills are made of chocolate'
declared Hansel, breaking off a bit."
1140
01:40:55,512 --> 01:40:59,142
"'The windowpanes are clear candy'
said Gretel. At that moment..."
1141
01:40:59,266 --> 01:41:02,896
Nancy Jo, do you think you could muster
just a tad more enthusiasm?
1142
01:41:03,020 --> 01:41:05,980
Lorenzo loves words.
He loves the sound of language.
1143
01:41:06,106 --> 01:41:09,526
Well, I'm paid to nurse,
not read stories.
1144
01:41:10,402 --> 01:41:13,862
You've decided his mind doesn't need
as much nurturing as his body?
1145
01:41:14,031 --> 01:41:16,081
What mind?
1146
01:41:16,659 --> 01:41:18,699
I beg your pardon!
1147
01:41:19,953 --> 01:41:22,333
Nothing.
1148
01:41:22,456 --> 01:41:24,536
Get out.
1149
01:41:24,667 --> 01:41:27,247
- Look, Mrs Odone...
- Just get out.
1150
01:41:27,378 --> 01:41:30,798
I've read up on this disease!
I know what it's done to his brain!
1151
01:41:30,923 --> 01:41:34,683
Sh! Lorenzo doesn't need this from
a subliterate with a double-digit IQ!
1152
01:41:34,802 --> 01:41:37,262
Face it. The lights are out
and nobody's home!
1153
01:41:37,429 --> 01:41:39,929
- Just get out. Go!
- Well, merry Christmas.
1154
01:41:40,057 --> 01:41:42,267
- Get out!
- Happy holidays!
1155
01:41:43,143 --> 01:41:45,193
And a joyous yuletide!
1156
01:41:53,112 --> 01:41:55,572
"Near a great forest
lived a poor woodcutter...
1157
01:41:55,698 --> 01:41:58,908
..with his two children,
Hansel and Gretel."
1158
01:41:59,034 --> 01:42:02,504
"Times were very hard and
a day came when there was no food,...
1159
01:42:02,621 --> 01:42:04,751
..except a little stale bread."
1160
01:42:04,832 --> 01:42:08,382
"But Hansel..." was like you, my darling.
1161
01:42:09,670 --> 01:42:15,470
"He was a clever lad who knew
how to solve difficult problems."
1162
01:42:17,219 --> 01:42:19,889
"The woodcutter was very sad..."
1163
01:42:20,848 --> 01:42:23,478
(Augusto) Are you going to
keep doing this?
1164
01:42:23,600 --> 01:42:27,810
She brought it on herself. She
consigned herself to the outer darkness.
1165
01:42:27,938 --> 01:42:32,528
Michaela, Nancy Jo, she was
a good nurse. You train her well.
1166
01:42:32,651 --> 01:42:35,651
Yes, but I want someone
to give him more than medication.
1167
01:42:35,779 --> 01:42:39,369
Someone who will minister
to his mind and his soul.
1168
01:42:40,326 --> 01:42:42,576
- I think I've found him.
- What?
1169
01:42:43,871 --> 01:42:47,081
I wrote to Omouri.
I asked him to come and stay with us.
1170
01:42:47,207 --> 01:42:48,207
- Omouri?
- Yes.
1171
01:42:48,334 --> 01:42:52,464
Lorenzo is surrounded by women all day.
I don't want him to grow up hag-ridden.
1172
01:42:52,588 --> 01:42:55,668
But you cannot take a boy
out of his fishing village...
1173
01:42:55,841 --> 01:42:57,931
..and bring him here to nurse Lorenzo.
1174
01:42:58,052 --> 01:43:01,722
Not to nurse him, to be his friend.
To bring the Comoros into this room.
1175
01:43:01,930 --> 01:43:08,150
We cannot uproot this young man
from his family, his way of life.
1176
01:43:09,229 --> 01:43:12,269
- Where will he live?
- Here, in Lorenzo's room.
1177
01:43:12,399 --> 01:43:15,489
But... he has no English.
1178
01:43:16,362 --> 01:43:19,412
He's a Muslim. An African.
1179
01:43:19,531 --> 01:43:25,001
We cannot bring an African to this racist
country to be a second-class citizen.
1180
01:43:25,120 --> 01:43:28,080
- This is Washington, DC.
- He'll be part of this family.
1181
01:43:28,207 --> 01:43:31,037
I'll teach him English.
There's a lot we can do for him.
1182
01:43:31,168 --> 01:43:33,208
Oh, Michaela...
1183
01:43:33,796 --> 01:43:35,836
Here. Sit down, sit down.
1184
01:43:37,466 --> 01:43:42,176
Now, the last time
Omouri saw Lorenzo,...
1185
01:43:42,304 --> 01:43:44,354
..he was climbing trees.
1186
01:43:44,473 --> 01:43:48,063
He was a wild and vibrant boy,
full of life.
1187
01:43:51,647 --> 01:43:54,527
In the letter that you wrote to Omouri,...
1188
01:43:55,693 --> 01:44:00,663
..did you tell him what he will see
when he walks into this room?
1189
01:44:02,116 --> 01:44:07,156
I told him he'd see a young man who
was very ill and had need of a friend.
1190
01:44:07,955 --> 01:44:09,575
That is all?
1191
01:44:09,707 --> 01:44:13,377
How would you have me describe him?
As a biochemical conundrum?
1192
01:44:13,502 --> 01:44:15,552
Non è vero.
1193
01:44:16,422 --> 01:44:19,512
You know he is not that for me.
1194
01:44:21,135 --> 01:44:24,845
Augusto, when you look at him,
what do you see?
1195
01:44:27,474 --> 01:44:29,944
Tell me the truth.
1196
01:46:03,904 --> 01:46:07,164
- How do I tell the man to give up?
- Say his health won't take it.
1197
01:46:07,324 --> 01:46:11,164
The hours he's working are daft.
Our expectations were unrealistic.
1198
01:46:11,328 --> 01:46:15,828
Look, Don's a man who's been working all
of his life in face creams and cosmetics.
1199
01:46:15,958 --> 01:46:19,498
With this oil, he's having the time
of his life. You tell him. I won't.
1200
01:46:19,628 --> 01:46:22,008
All right. For his own sake, I'll have to.
1201
01:46:22,131 --> 01:46:26,761
Then you can call Mrs Odone and
tell her that you've pulled the plug.
1202
01:46:29,471 --> 01:46:32,771
- I'd best leave him be.
- I think you're right.
1203
01:46:44,695 --> 01:46:46,735
Omouri!
1204
01:47:03,505 --> 01:47:05,545
(Lorenzo gasping)
1205
01:47:33,243 --> 01:47:36,543
Lorenzo... Omouri is here.
1206
01:47:55,265 --> 01:47:57,305
(sings in Swahili)
1207
01:48:43,272 --> 01:48:46,572
- Morning.
- Good morning, Mr Suddaby.
1208
01:48:46,692 --> 01:48:50,822
There's a bottle of pure erucic acid
triglyceride on my bench.
1209
01:48:50,946 --> 01:48:54,986
Will you see that it gets to young
Mr Odone as soon as possible, please?
1210
01:48:55,659 --> 01:48:57,699
I'm off home now. Bye-bye.
1211
01:48:58,662 --> 01:49:00,372
(woman) Goodbye, Mr Suddaby.
1212
01:49:04,251 --> 01:49:06,961
(man) Well, we'd better get on with it.
1213
01:49:15,638 --> 01:49:19,138
Four parts our old friend, the oleic.
1214
01:49:20,601 --> 01:49:22,601
And...
1215
01:49:23,228 --> 01:49:26,398
..one part erucic.
1216
01:49:28,150 --> 01:49:31,820
And the journey begins,
and like all good journeys,...
1217
01:49:31,987 --> 01:49:34,657
..with food.
1218
01:49:37,201 --> 01:49:39,451
Where's the wretched nurse?
1219
01:49:39,578 --> 01:49:43,458
I'm gonna take my baseline myself
if she doesn't get here soon.
1220
01:49:43,582 --> 01:49:47,382
A month is much too long.
If we check my blood every week...
1221
01:49:47,503 --> 01:49:52,973
..and I have a cardiogram, we should
know enough to start Lorenzo sooner.
1222
01:49:53,092 --> 01:49:55,342
- (knock on door)
- Oh, at last!
1223
01:50:03,769 --> 01:50:05,559
Hi.
1224
01:50:05,688 --> 01:50:07,478
How's the mother tiger?
1225
01:50:09,066 --> 01:50:13,026
Augusto didn't tell you?
I'm here to be Lorenzo's rat.
1226
01:50:15,280 --> 01:50:17,950
That's a very kind offer,
but I can't let you.
1227
01:50:18,075 --> 01:50:22,035
I'm a carrier, just like you. My blood
levels are just as high as yours.
1228
01:50:22,162 --> 01:50:26,082
I've had my baseline taken...
and I'm starving.
1229
01:50:27,710 --> 01:50:31,460
Oh, I have been wanting
to meet Lorenzo's main man.
1230
01:50:32,715 --> 01:50:35,085
(Omouri) I am content
to greet Aunt Deirdre.
1231
01:50:35,217 --> 01:50:37,847
Well, it's good to meet you too.
1232
01:50:37,970 --> 01:50:42,640
Now, now, Michaela. I want no argument.
Michaela, you cannot test it.
1233
01:50:42,766 --> 01:50:46,936
- Lorenzo needs you fit and well.
- So you would put Deirdre at risk...
1234
01:50:47,062 --> 01:50:51,532
- ..without even discussing...
- Hey! I backpacked all through India.
1235
01:50:51,650 --> 01:50:54,700
I must have eaten
rapeseed oil up the wazoo.
1236
01:50:54,820 --> 01:50:58,320
- Ah, I've been fasting all day.
- All right, go ahead. Try it.
1237
01:50:58,407 --> 01:51:00,487
OK, here goes.
1238
01:51:04,330 --> 01:51:06,710
So... does it taste awful?
1239
01:51:07,583 --> 01:51:09,753
- No? Good.
- It's good.
1240
01:51:09,877 --> 01:51:12,297
Good. Eat, eat.
1241
01:51:16,967 --> 01:51:19,347
(Suddaby) Your sister
had no side effects?
1242
01:51:19,470 --> 01:51:23,930
None at all. If we can normalise the
levels of a carrier so quickly, who knows?
1243
01:51:24,058 --> 01:51:27,098
- We'll start Lorenzo immediately.
- Marvellous.
1244
01:51:27,227 --> 01:51:29,227
- We're all terribly grateful.
- No, no.
1245
01:51:29,355 --> 01:51:34,105
- Not to mention Deedee, the family rat.
- (Suddaby laughs)
1246
01:51:34,234 --> 01:51:38,034
- What dosage will you give the lad?
- We don't have time to be conservative.
1247
01:51:38,197 --> 01:51:40,617
We've decided on eight grams.
1248
01:52:34,378 --> 01:52:37,128
(Deirdre) ¶ I ride an old paint
1249
01:52:37,298 --> 01:52:39,758
¶ And lead on an old Dan
1250
01:52:39,883 --> 01:52:42,513
¶ I'm goin' to Montana
1251
01:52:42,636 --> 01:52:45,426
- ¶ To throw the Hoolihan
- (phone rings)
1252
01:52:50,811 --> 01:52:52,521
- Hello.
- (man) Mr Odone?
1253
01:52:52,646 --> 01:52:54,056
Odo-ne, yes.
1254
01:52:54,189 --> 01:52:57,739
Look, we have a problem
with this blood sample.
1255
01:52:57,860 --> 01:53:00,820
You have a problem?
What is the problem?
1256
01:53:00,946 --> 01:53:04,446
Could there have been
a mistake in the labelling?
1257
01:53:04,575 --> 01:53:07,325
No. No mistake. Why?
1258
01:53:07,453 --> 01:53:13,253
Well, we ran the assay twice and
the levels of C24 and C26 read normal.
1259
01:53:19,465 --> 01:53:21,505
They read normal?
1260
01:53:22,509 --> 01:53:25,599
Well, uh, I...
1261
01:53:26,847 --> 01:53:29,017
Do you have the sample in front of you?
1262
01:53:29,183 --> 01:53:30,813
Yes.
1263
01:53:30,934 --> 01:53:34,904
- What is the name on the sample?
- Lorenzo Michael Murphy Odone.
1264
01:53:35,022 --> 01:53:37,072
It's Odo-ne.
1265
01:53:37,816 --> 01:53:40,066
No, there's no mistake.
1266
01:53:41,070 --> 01:53:43,950
- But thank you very much.
- OK, bye.
1267
01:53:54,166 --> 01:53:56,916
¶ Whoopie-ti-yi-yo
1268
01:53:57,044 --> 01:53:59,804
¶ Get along, little dogies...
1269
01:54:09,556 --> 01:54:11,926
- What's going on?
- His levels are normal.
1270
01:54:12,059 --> 01:54:14,729
- Play! Play!
- Oh, that's wonderful!
1271
01:54:18,190 --> 01:54:20,820
(Wendy) Now, drink it up, son.
1272
01:54:20,943 --> 01:54:23,243
Every last drop. Good.
1273
01:54:24,863 --> 01:54:29,163
Mom says this is
the only bottle in the world.
1274
01:54:30,911 --> 01:54:33,831
Now that we have destroyed
Lorenzo's blood fats,...
1275
01:54:33,956 --> 01:54:38,086
..I'm sure that Mr Suddaby
will make us plenty more, huh?
1276
01:54:38,961 --> 01:54:42,671
Mom says this is bootleg.
1277
01:54:44,300 --> 01:54:46,800
I know this is only
a fraction of what it cost...
1278
01:54:46,927 --> 01:54:49,557
- No, no, no, Wendy.
- You gotta take it.
1279
01:54:49,722 --> 01:54:53,022
No, we work on the barter system.
1280
01:54:53,142 --> 01:54:55,732
Our oil, your produce, huh?
1281
01:54:55,853 --> 01:54:59,233
There aren't that many
potatoes in the world.
1282
01:54:59,356 --> 01:55:01,396
OK. Here you go.
1283
01:55:03,068 --> 01:55:04,818
So, when will you tell Nikolais?
1284
01:55:04,987 --> 01:55:08,777
Well, we told him and the other doctors
and we sent all the figures.
1285
01:55:08,907 --> 01:55:13,197
- What did they have to say?
- They deliberate. They want more study.
1286
01:55:13,329 --> 01:55:16,669
- Wendy, that's enough.
- So the other kids have to wait?
1287
01:55:16,790 --> 01:55:19,000
We know what to do
about that, don't we?
1288
01:55:19,084 --> 01:55:22,344
The doctors had a very hard time
swallowing the first oil.
1289
01:55:22,463 --> 01:55:25,923
They want to see how it goes
with Lorenzo on the second.
1290
01:55:26,050 --> 01:55:28,430
- But we don't have time, do we?
- No.
1291
01:55:28,552 --> 01:55:31,852
So we leave science
to its own concerns, huh?
1292
01:55:33,557 --> 01:55:36,017
- Merry Christmas.
- Goodbye, Jake.
1293
01:55:47,821 --> 01:55:49,871
(silence)
1294
01:56:10,928 --> 01:56:13,678
What happened to the suction machine?
1295
01:56:13,806 --> 01:56:17,766
There's no need, Michaela.
Not for four hours.
1296
01:56:17,893 --> 01:56:19,813
I turned the machine off.
1297
01:56:22,606 --> 01:56:25,396
All last night he made
to swallow for himself.
1298
01:56:26,485 --> 01:56:29,235
Augusto! Augusto!
1299
01:56:39,581 --> 01:56:42,331
We hope to make
an announcement quite soon...
1300
01:56:42,459 --> 01:56:46,299
..about a new development
in our diet therapy.
1301
01:56:46,422 --> 01:56:49,552
It's expensive but,
with the help of the government...
1302
01:56:49,675 --> 01:56:52,335
..and of this wonderful foundation,...
1303
01:56:52,469 --> 01:56:57,019
..we are going to start a trial
before the end of the year.
1304
01:57:06,108 --> 01:57:09,608
I can hear from that
that you wish us Godspeed.
1305
01:57:20,956 --> 01:57:22,706
Excuse me, Doctor!
1306
01:57:22,833 --> 01:57:26,173
Are you referring to the oil
the Odones have invented for Lorenzo?
1307
01:57:26,337 --> 01:57:29,337
- We'll take questions later.
- No, it's a good question.
1308
01:57:29,506 --> 01:57:33,926
I should have mentioned it perhaps but...
The Odones have been extremely active...
1309
01:57:34,053 --> 01:57:36,063
..and we are in their debt.
1310
01:57:36,180 --> 01:57:38,850
Thanks to them,
we are preparing a protocol...
1311
01:57:38,974 --> 01:57:42,194
..for review by
the human-studies committee.
1312
01:57:42,311 --> 01:57:45,561
If then we can persuade
the government to fund us,...
1313
01:57:45,689 --> 01:57:51,399
..then we shall know if this oil is of
more than temporary therapeutic value.
1314
01:57:51,528 --> 01:57:54,778
But it works! Lorenzo's
blood levels are down to normal.
1315
01:57:54,907 --> 01:57:59,327
It's precisely for that reason
that we are conducting this trial.
1316
01:57:59,453 --> 01:58:01,793
You don't expect me
to endorse a therapy...
1317
01:58:01,914 --> 01:58:05,084
..just on the basis
of one hopeful observation?
1318
01:58:05,250 --> 01:58:08,500
There's two! My boy's been
takin' the oil for six months.
1319
01:58:08,629 --> 01:58:11,879
Yes, Ellard, and his blood levels
are down to normal. He's fine.
1320
01:58:12,007 --> 01:58:13,927
You are playing with people's hopes.
1321
01:58:14,051 --> 01:58:19,221
Where do these Odones get off, thinking
they know more than the doctors?
1322
01:58:19,390 --> 01:58:22,810
- Where did you get this oil?
- The Odones. They get it from England.
1323
01:58:22,935 --> 01:58:27,185
They don't have approval from the FDA.
It's bootleg. Give the doctors a chance...
1324
01:58:27,314 --> 01:58:30,114
Come on, Ellard!
It's a mixture of two cooking oils.
1325
01:58:30,234 --> 01:58:34,534
Two cooking oils? What's the dosage,
please? What are the side effects of this?
1326
01:58:34,613 --> 01:58:37,703
- How would we pay for it?
- There must be a formal protocol...
1327
01:58:37,825 --> 01:58:42,495
..before we can raise funds. I understand
it will cost over $1,000 a litre.
1328
01:58:42,621 --> 01:58:48,591
And no insurance company or government
will support you without the approval.
1329
01:58:48,711 --> 01:58:51,801
And the only way to get it
is through thorough testing.
1330
01:58:51,964 --> 01:58:55,554
That's what they told AIDS people
about AZT, but they fought and got it.
1331
01:58:55,676 --> 01:58:59,346
Because they were dying.
They didn't have time to wait...
1332
01:58:59,471 --> 01:59:02,771
We padded our walls yesterday!
I want that oil!
1333
01:59:13,193 --> 01:59:16,913
There, my darling. That's a sweet boy.
1334
01:59:18,824 --> 01:59:20,874
What a big, strong boy.
1335
01:59:21,744 --> 01:59:24,204
Yes, my darling. Yes.
1336
01:59:57,029 --> 01:59:58,659
You see, Michaela,...
1337
01:59:58,781 --> 02:00:03,161
..it's as though he is trapped
down in some dark cave.
1338
02:00:04,662 --> 02:00:09,962
Because he's lost so much myelin,
he can't find his way out.
1339
02:00:10,084 --> 02:00:13,884
Now, we know
his simple functions are intact.
1340
02:00:14,004 --> 02:00:17,764
He breathes, he swallows,
his heart beats.
1341
02:00:18,467 --> 02:00:23,427
And from the outside world,
he receives sensation.
1342
02:00:23,555 --> 02:00:25,635
A touch,...
1343
02:00:27,267 --> 02:00:29,307
..pain, cold.
1344
02:00:29,979 --> 02:00:33,319
And here are the primal feelings.
1345
02:00:33,440 --> 02:00:36,610
Fear, hunger, desire.
1346
02:00:38,195 --> 02:00:43,865
While up here in the neocortex,
the higher brain, locked here,...
1347
02:00:43,993 --> 02:00:48,293
..are his reasoning,
imagination, memory.
1348
02:00:49,456 --> 02:00:52,326
The things that make us each ourselves.
1349
02:00:57,506 --> 02:00:59,546
So how does he reach us?
1350
02:01:02,594 --> 02:01:05,894
When a simple swallow
is such a huge task?
1351
02:01:09,476 --> 02:01:11,516
To find...
1352
02:01:12,146 --> 02:01:16,146
To find the way,
the path from his mind...
1353
02:01:17,985 --> 02:01:20,025
..to the outside world...
1354
02:01:22,114 --> 02:01:25,584
..is like willing himself
through a brick wall.
1355
02:01:27,911 --> 02:01:29,961
So he waits, huh?
1356
02:01:35,127 --> 02:01:37,167
He waits.
1357
02:01:39,465 --> 02:01:41,505
Michaela...
1358
02:01:46,889 --> 02:01:48,929
Do you ever think...
1359
02:01:51,727 --> 02:01:53,767
..that...
1360
02:01:55,314 --> 02:01:58,404
..maybe all this struggle,...
1361
02:02:00,569 --> 02:02:04,239
..it may have been for
somebody else's kid?
1362
02:02:23,175 --> 02:02:25,215
Yes.
1363
02:02:55,749 --> 02:02:58,629
But I promised... I promised him...
1364
02:02:59,420 --> 02:03:01,840
..his world would never be silent.
1365
02:03:03,799 --> 02:03:05,839
He would never be alone.
1366
02:03:07,386 --> 02:03:09,216
Yes.
1367
02:03:12,057 --> 02:03:14,887
(Michaela) "One morning,
a little rabbit sat on a bank."
1368
02:03:15,019 --> 02:03:19,359
"He pricked his ears and listened
to the trit-trot, trit-trot of a pony."
1369
02:03:19,481 --> 02:03:23,111
"A gig was coming along the road.
It was driven by Mr McGregor."
1370
02:03:23,235 --> 02:03:26,735
"And beside him sat Mrs McGregor
in her best bonnet."
1371
02:03:26,905 --> 02:03:30,615
"As soon as they had passed, little
Benjamin Bunny slid down into the road...
1372
02:03:30,743 --> 02:03:34,833
..and set off with a hop, skip and a jump
to call upon his relations,...
1373
02:03:34,955 --> 02:03:38,665
..who lived in the woods
at the back of Mr McGregor's garden."
1374
02:03:38,792 --> 02:03:43,422
"That wood was full of rabbit holes,
and in the neatest, sandiest hole of all...
1375
02:03:43,547 --> 02:03:48,677
..lived Benjamin's aunt and his cousins,
Flopsy, Mopsy, Cottontail and Peter."
1376
02:03:48,802 --> 02:03:52,142
- "Old Mrs Rabbit was a widow. She..."
- (grunts)
1377
02:03:52,264 --> 02:03:55,854
"..earned her living by knitting
rabbit-wool mittens and muffeties."
1378
02:03:55,976 --> 02:03:58,016
"I once bought a pair..."
1379
02:03:59,521 --> 02:04:02,611
What's the matter, darling?
You don't like the story?
1380
02:04:10,240 --> 02:04:12,080
Lorenzo...
1381
02:04:14,078 --> 02:04:15,788
You don't like the story?
1382
02:04:18,624 --> 02:04:20,584
He does that a lot lately.
1383
02:04:20,709 --> 02:04:22,959
- When?
- Mainly at story time.
1384
02:04:24,171 --> 02:04:26,221
Sweetheart...
1385
02:04:26,715 --> 02:04:28,755
Listen carefully to Mama.
1386
02:04:30,803 --> 02:04:33,563
Is your middle name Patrick?
1387
02:04:37,518 --> 02:04:40,728
No... Is it Peter?
1388
02:04:43,941 --> 02:04:46,071
No, Mommy.
1389
02:04:46,193 --> 02:04:49,033
Is it Michael? Michael Murphy?
1390
02:04:52,157 --> 02:04:53,827
Yes! Yes!
1391
02:04:53,951 --> 02:04:56,001
Only you don't know how to say that.
1392
02:04:56,120 --> 02:04:58,580
Will you teach Mommy how to say no?
1393
02:04:58,706 --> 02:05:01,996
When you close your eyes,
does that mean no?
1394
02:05:02,126 --> 02:05:05,336
Oh, what an idiot!
That was a yes question.
1395
02:05:05,462 --> 02:05:10,512
All right. You don't want to hear
any more Benjamin Bunny, do you?
1396
02:05:13,262 --> 02:05:16,722
That's an emphatic reply!
Very well, young man.
1397
02:05:17,850 --> 02:05:23,060
No more Benjamin Bunny. How could
Mommy have been so thoughtless?
1398
02:05:23,188 --> 02:05:27,818
We're going to take all of these
baby books to the children's hospital.
1399
02:05:27,985 --> 02:05:31,525
It's time for the big stuff.
Something heroic.
1400
02:05:31,655 --> 02:05:34,655
There you go.
You gotta tell us what you want.
1401
02:05:34,783 --> 02:05:37,953
The Once and Future King by TH White.
1402
02:05:40,706 --> 02:05:45,246
"The boy slept well in the woodland nest,
where he had laid himself down."
1403
02:05:45,419 --> 02:05:48,509
"At first, he only dipped
below the surface of sleep...
1404
02:05:48,631 --> 02:05:51,801
..and skimmed along
like a salmon in shallow water,...
1405
02:05:51,925 --> 02:05:56,465
..so close to the surface
that he fancied himself in air."
1406
02:05:57,389 --> 02:06:00,809
"He thought himself awake,
when he was already asleep."
1407
02:06:00,934 --> 02:06:02,654
"He saw the stars above his face,...
1408
02:06:02,811 --> 02:06:05,861
..whirling on their silent
and sleepless axis,...
1409
02:06:05,981 --> 02:06:09,531
..and the leaves of the trees
rustling against them."
1410
02:06:09,652 --> 02:06:12,822
"And he heard small changes
in the grass."
1411
02:06:12,988 --> 02:06:17,488
"These little noises of footsteps
and soft-fringed wing beats...
1412
02:06:17,618 --> 02:06:20,368
..and stealthy bellies
drawn over the grass blades."
1413
02:06:20,496 --> 02:06:26,036
"A rattling against the bracken at first
frightened him, but interested him."
1414
02:06:31,632 --> 02:06:33,342
OK. Is it your thumb?
1415
02:06:36,136 --> 02:06:38,176
Is it your index finger?
1416
02:06:40,808 --> 02:06:42,848
Your middle finger?
1417
02:06:44,561 --> 02:06:46,901
Your little finger?
1418
02:06:47,022 --> 02:06:51,492
It's your little finger. You think
you can move your little finger.
1419
02:06:51,610 --> 02:06:55,360
OK. Tell your brain to tell your arm...
1420
02:06:55,531 --> 02:06:59,031
..to tell your hand
to move your little finger.
1421
02:07:02,037 --> 02:07:05,117
Come on, sweetheart.
Tell your brain to tell your arm...
1422
02:07:05,249 --> 02:07:08,669
..to tell your hand
to move your little finger.
1423
02:07:09,670 --> 02:07:12,340
Come on, my friend.
What a wonderful thing. A "yes".
1424
02:07:12,464 --> 02:07:15,304
And then there'll be
a "could be" and a "perhaps"...
1425
02:07:15,426 --> 02:07:18,926
..and maybe even a "shut up, Mommy",
but now we just have to get to "yes".
1426
02:07:19,096 --> 02:07:22,176
So tell your brain to tell your arm...
1427
02:07:22,308 --> 02:07:25,598
..to tell your hand
to move your little finger.
1428
02:07:28,856 --> 02:07:32,526
Come on, my love.
Tell your brain to tell your hand...
1429
02:07:32,943 --> 02:07:34,993
..to move your little finger.
1430
02:07:37,906 --> 02:07:41,156
- (Deirdre) Come on, Lorenzo.
- (Omouri) You can do it, my friend.
1431
02:07:41,285 --> 02:07:43,325
You can do it.
1432
02:07:44,705 --> 02:07:46,745
(Augusto) Come on, Lorenzo.
1433
02:07:50,961 --> 02:07:53,011
(all gasp with pleasure)
1434
02:08:07,144 --> 02:08:10,564
(Augusto) And they are born
without myelin, correct?
1435
02:08:10,689 --> 02:08:14,819
(man) The only naturally dismyelinated
higher mammals in existence.
1436
02:08:14,943 --> 02:08:17,323
(Augusto) And this is passed
from mother to son?
1437
02:08:17,446 --> 02:08:19,446
Yes.
1438
02:08:19,573 --> 02:08:22,873
Their mother is from Edinburgh.
That's Jasmine.
1439
02:08:22,993 --> 02:08:25,453
She doesn't shake, but her male pups do.
1440
02:08:25,996 --> 02:08:30,496
- You think you can stop them shaking?
- Well, we hope so.
1441
02:08:30,626 --> 02:08:35,086
By implanting nerve cells, we expect
to see the growth of new myelin.
1442
02:08:35,214 --> 02:08:38,634
We've been partially remyelinating
rats and mice for ten years,...
1443
02:08:38,759 --> 02:08:41,009
..and it's repeatable.
1444
02:08:42,012 --> 02:08:47,432
But if we could fund this work,
it could be the first in higher animals.
1445
02:08:47,559 --> 02:08:50,479
And then in human beings, huh?
1446
02:08:50,604 --> 02:08:52,614
Well, in time, yes.
1447
02:08:53,315 --> 02:08:56,935
Dr Duncan,
if I help you raise these funds...
1448
02:08:57,069 --> 02:09:00,409
..and if we can get the researchers
together to collaborate,...
1449
02:09:00,531 --> 02:09:04,871
..I think we can achieve
very much in a very short time.
1450
02:09:05,035 --> 02:09:08,865
Augusto, we scientists
are a very competitive lot.
1451
02:09:08,998 --> 02:09:14,498
Such a collaboration is a lovely idea,
but sadly that is not how science works.
1452
02:09:14,628 --> 02:09:19,548
That's not necessarily so, because
remember the Manhattan Project?
1453
02:09:19,675 --> 02:09:23,635
28 months. It took them 28 months.
1454
02:09:23,762 --> 02:09:28,102
Now, if scientists can come together
to build the atomic bomb,...
1455
02:09:28,225 --> 02:09:33,145
..surely they come together
to remyelinate some puppy dogs?
1456
02:09:44,742 --> 02:09:47,332
(Michaela) Papa called from Italy, darling.
1457
02:09:47,453 --> 02:09:51,293
He's missing his Lorenzacchio
very, very much.
1458
02:09:51,415 --> 02:09:55,495
But he wants me to tell you
he's making a big dinner tonight,...
1459
02:09:55,628 --> 02:09:59,758
..a banquet of brain food for
the cleverest doctors in the world...
1460
02:09:59,882 --> 02:10:04,052
.. who've gathered together to put the
myelin back in the shaking puppy dogs.
1461
02:10:04,178 --> 02:10:06,718
And if they can achieve that,...
1462
02:10:06,889 --> 02:10:11,729
..someday there might be a way to help
all the people who've lost their myelin.
1463
02:10:11,852 --> 02:10:15,942
Not only the boys with ALD,
but the people with multiple sclerosis...
1464
02:10:16,065 --> 02:10:18,725
..and many other diseases, Lorenzo.
1465
02:10:19,568 --> 02:10:24,488
And then think, my brave boy, if they
can ever give you back your myelin,...
1466
02:10:24,615 --> 02:10:30,825
..you'll be able to tell your brain to tell
your toes, your fingers, your anything,...
1467
02:10:30,955 --> 02:10:33,865
- ..to do what you want them to do.
- (Lorenzo) ..what I want them to do.
1468
02:10:33,999 --> 02:10:36,339
(both) And then, one day,...
1469
02:10:37,127 --> 02:10:39,297
(Lorenzo) ..I'll hear my voice...
1470
02:10:39,421 --> 02:10:44,181
..and all these words I'm thinking
will get outside my head.
1471
02:11:57,875 --> 02:12:00,125
Oh! Now it broke!
1472
02:12:04,381 --> 02:12:07,051
This is Charles and this is Harry...
1473
02:12:07,176 --> 02:12:10,176
..and they've both been on
Lorenzo's Oil for two years.
1474
02:12:10,304 --> 02:12:13,724
My name is Michael Benton
and I'm twelve and a half years old.
1475
02:12:13,849 --> 02:12:17,269
I've been taking Lorenzo's Oil
for four and a half years.
1476
02:12:17,436 --> 02:12:23,276
I was diagnosed with ALD when I was
13 years old. I'm taking Lorenzo's Oil...
1477
02:12:23,442 --> 02:12:26,362
I've been taking Lorenzo's Oil
for three years.
1478
02:12:26,487 --> 02:12:31,327
Some of the activities I'm involved in
are baseball, basketball...
1479
02:12:31,450 --> 02:12:33,700
(medley of voices continues)
122381
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