1 00:02:20,290 --> 00:02:23,630 - One orange. - One orange. 2 00:02:23,760 --> 00:02:27,010 - Chungwa moja. - Chungwa moja. 3 00:02:27,130 --> 00:02:30,300 - Two oranges. - Two oranges. 4 00:02:30,430 --> 00:02:34,180 - Machungwa mawili. - Machungwa mawili. 5 00:02:34,310 --> 00:02:37,980 - One pineapple. - One pineapple. 6 00:04:11,990 --> 00:04:14,030 Omouri! Omouri! 7 00:05:22,100 --> 00:05:24,940 Here he is, the cleverest boy in the world. 8 00:05:27,730 --> 00:05:29,690 - Hi, Mom. - What's this? 9 00:05:29,820 --> 00:05:32,280 - It's a picture. - Oh, my goodness. 10 00:05:32,400 --> 00:05:35,200 - And there's the Comoros. - Of course it is. 11 00:05:35,360 --> 00:05:38,580 - Mrs Odone, may I have a word? - Very skilful, sweetheart. 12 00:05:38,700 --> 00:05:41,540 - And Jupiter. - Jupiter next to the Comoros? 13 00:05:41,660 --> 00:05:44,870 - I'll be right there, Lorenzo. - OK, Mommy. 14 00:05:45,000 --> 00:05:48,920 - Is Lorenzo having problems at home? - Not that I know of. Why? 15 00:05:49,040 --> 00:05:53,970 Today he started throwing paints around. He went wild, destroying other paintings. 16 00:05:54,090 --> 00:05:57,340 - He must have been provoked. - No, it came out of the blue. 17 00:05:57,470 --> 00:05:59,930 He's normally such a terrific kid. 18 00:06:04,480 --> 00:06:07,230 - Darling, were they teasing you? - No. 19 00:06:07,350 --> 00:06:09,940 - Were they touching your paints? - No. 20 00:06:10,070 --> 00:06:12,530 - How were they annoying you? - They just were. 21 00:06:12,650 --> 00:06:14,400 - Doing what? - Things. 22 00:06:14,530 --> 00:06:18,740 - What kind of things? - Things that make me feel annoyed. 23 00:06:25,580 --> 00:06:26,960 - Mrs Odone... - Another incident? 24 00:06:27,170 --> 00:06:30,040 Yes, and today it was much worse. 25 00:06:30,170 --> 00:06:33,670 Mrs Odone, is there some trouble at home? 26 00:06:33,800 --> 00:06:35,840 Why do you assume the trouble's at home? 27 00:06:35,970 --> 00:06:41,640 Because there's nothing here that explains his behaviour. It's... disturbed. 28 00:07:08,330 --> 00:07:10,670 He does present as a hyperactive. 29 00:07:10,790 --> 00:07:15,130 - But don't they repeat tasks endlessly? - They perseverate, yes. 30 00:07:15,260 --> 00:07:19,130 Lorenzo's activities all have a structure: beginning, middle and end. 31 00:07:19,260 --> 00:07:23,350 My gosh, he's learned three languages. How could he be hyperactive? 32 00:07:24,430 --> 00:07:28,100 I know it's hard to accept that a gifted child may also be disturbed. 33 00:07:28,230 --> 00:07:31,360 Lorenzo needs to be referred to an IDP committee. 34 00:07:31,480 --> 00:07:33,320 - What's that? - For what? 35 00:07:33,480 --> 00:07:36,240 Individual Disability Placement. 36 00:07:36,400 --> 00:07:39,820 Lorenzo needs to be in a special ed class. 37 00:07:39,950 --> 00:07:43,910 Any special ed our son needs will be provided at home. 38 00:07:44,030 --> 00:07:47,910 Anyhow, it was snowing and he began to rub my hands to warm them. 39 00:07:48,040 --> 00:07:48,580 Uh-oh. 40 00:07:48,750 --> 00:07:51,630 No, he then produced photos of his wife and children. 41 00:07:51,790 --> 00:07:54,630 - That old routine! - Oh, Deirdre! 42 00:07:54,800 --> 00:07:57,630 Had I known this was the man I would wait ten years for... 43 00:07:57,760 --> 00:08:00,380 - ...I'd have let you pick up the cheque. - I did. 44 00:08:00,510 --> 00:08:02,550 Excuse me! You did not! 45 00:08:20,650 --> 00:08:24,700 Lorenzo's fallen off his bike and he is really bleeding. 46 00:08:24,830 --> 00:08:27,660 Sh. That's a boy. 47 00:08:27,790 --> 00:08:30,290 Oh, such a brave boy. 48 00:08:30,460 --> 00:08:32,500 Doing just fine, here. 49 00:08:32,630 --> 00:08:35,290 You're going to be OK. 50 00:08:35,460 --> 00:08:37,380 It's Christmas Day, you know. 51 00:08:37,460 --> 00:08:41,840 All across the country little boys are trying out their new bikes. 52 00:08:43,510 --> 00:08:47,430 Hey, champ. I think you'd better tell your folks to lighten up. 53 00:08:47,560 --> 00:08:50,680 What are they gonna do when you're playing for the Redskins? 54 00:09:33,140 --> 00:09:38,730 The EEG is normal, the skull x-ray is normal and the CT scan is normal. 55 00:09:38,860 --> 00:09:42,400 I don't know what to tell you. This boy is neurologically intact. 56 00:09:42,530 --> 00:09:45,530 Doctor, we spent three years in East Africa. 57 00:09:45,660 --> 00:09:48,240 - In the Comoros. - We were wondering... 58 00:09:48,370 --> 00:09:51,750 Well, if he might have picked up some rare parasite. 59 00:09:52,620 --> 00:09:54,620 It's possible. 60 00:10:03,800 --> 00:10:05,840 Lorenzo, what are you doing? 61 00:10:07,510 --> 00:10:09,560 Lorenzo! 62 00:10:16,730 --> 00:10:20,690 Sweetie? Can you hear Mommy? 63 00:10:20,820 --> 00:10:24,360 This may be an auditory processing difficulty. 64 00:10:24,530 --> 00:10:29,660 The ears hear all right, but the brain has trouble listening. 65 00:10:29,780 --> 00:10:33,870 So, this means something is affecting his brain. 66 00:10:34,000 --> 00:10:37,540 But what? A tumour? Multiple sclerosis? 67 00:10:37,710 --> 00:10:39,840 It could be any one of a dozen things. 68 00:10:50,510 --> 00:10:55,230 Listen, my friend. I'd like you to come and stay in the hospital for three days. 69 00:10:55,350 --> 00:10:57,270 Your mom and dad can come too. 70 00:10:57,390 --> 00:11:00,440 We're gonna run some tests and get to the bottom of this. 71 00:11:07,030 --> 00:11:09,070 Can you hear the sound? 72 00:11:09,570 --> 00:11:13,490 Keep your eyes right on that spot for me. That helps me out. 73 00:11:14,870 --> 00:11:16,790 All right. Now close your eyes. 74 00:11:30,470 --> 00:11:33,970 Keep your eyes closed, buddy. Stay nice and still. 75 00:13:20,830 --> 00:13:25,380 Of course, Easter festivals existed long before baby Jesus. 76 00:13:25,500 --> 00:13:28,590 In pagan times, they marked the beginning of Spring. 77 00:13:28,750 --> 00:13:33,930 The egg tells us that the earth is going to be reborn, just like a little baby chick. 78 00:13:34,050 --> 00:13:36,800 - I get it. - Mrs Odone. Mr Odone. 79 00:13:37,220 --> 00:13:39,390 Dr Judalon is ready now. 80 00:13:39,520 --> 00:13:43,230 Hey, Lorenzo, would you like to go feed the goldfish? 81 00:13:43,890 --> 00:13:45,980 It's all right, sweetheart. Go ahead. 82 00:13:46,150 --> 00:13:50,150 We'll be right back in just a few minutes. Go ahead. 83 00:13:50,280 --> 00:13:52,320 This way, please. 84 00:13:58,530 --> 00:14:00,580 Please, have a seat. 85 00:14:13,970 --> 00:14:17,260 Well, we certainly don't need that noise, do we? 86 00:14:25,640 --> 00:14:26,560 So... 87 00:14:27,060 --> 00:14:30,570 Please, Doctor, without equivocation. 88 00:14:33,820 --> 00:14:37,320 There is a family of diseases. It's quite rare. 89 00:14:37,450 --> 00:14:39,830 The leukodystrophies. 90 00:14:39,950 --> 00:14:43,250 Lorenzo has one of them. It's called ALD. 91 00:14:45,040 --> 00:14:50,130 ALD is an inborn error of metabolism that causes a degeneration of the brain. 92 00:14:51,460 --> 00:14:56,090 It only affects males, usually between the ages of five and ten. 93 00:14:56,970 --> 00:15:01,100 Its progress is relentless. The end is inevitable. 94 00:15:02,310 --> 00:15:06,850 All boys with ALD die, usually within two years of diagnosis. 95 00:15:16,610 --> 00:15:18,910 And there are no exceptions? 96 00:15:20,070 --> 00:15:22,120 I am so sorry. 97 00:15:24,290 --> 00:15:26,710 - Are you absolutely sure? - Yes. 98 00:15:29,000 --> 00:15:31,290 Lorenzo shows the definitive sign: 99 00:15:31,420 --> 00:15:37,630 ...an abnormally high level of fat in his blood, certain long-chain saturated fats. 100 00:15:40,510 --> 00:15:42,350 Oh. 101 00:15:43,760 --> 00:15:45,600 Uh... 102 00:15:46,270 --> 00:15:49,770 These fats... destroy his brain? 103 00:15:52,110 --> 00:15:54,150 But how? 104 00:15:55,110 --> 00:15:58,110 There is an enzyme that should metabolise these fats... 105 00:15:58,240 --> 00:16:00,490 ...but in ALD boys it's defective. 106 00:16:00,610 --> 00:16:06,500 So they collect in the nerve cells, a little bit like a cluster on the arteries. 107 00:16:06,660 --> 00:16:10,580 And... in some way... 108 00:16:11,670 --> 00:16:14,670 ...this liquefies the white matter of the brain. 109 00:16:14,840 --> 00:16:18,510 "Some way liquefies"? Could you be more specific? 110 00:16:18,630 --> 00:16:22,970 Well, to be honest, we're not quite certain just how it works. 111 00:16:24,180 --> 00:16:26,640 - You know what myelin is? - No. 112 00:16:27,600 --> 00:16:31,600 Myelin is the fatty... sheath that insulates the nerves. 113 00:16:31,730 --> 00:16:35,110 It's a little bit like plastic around electrical wires. 114 00:16:35,230 --> 00:16:38,780 Without it, the nerves cannot conduct an impulse. 115 00:16:38,900 --> 00:16:44,030 What ALD does is strip away the myelin. It corrodes it, if you like. 116 00:16:44,200 --> 00:16:48,950 This causes degeneration of the brain and the body loses its functions. 117 00:16:55,090 --> 00:16:58,960 But surely someone, somewhere, must be working on this, no? 118 00:16:59,090 --> 00:17:01,300 - We would go anywhere. - Yes. 119 00:17:02,090 --> 00:17:04,970 Ten years ago the disease hadn't even been identified. 120 00:17:05,100 --> 00:17:08,640 We're still trying to understand just what it is. 121 00:17:14,860 --> 00:17:18,530 I would like to offer you some hope, but... 122 00:17:21,030 --> 00:17:24,200 Then there's absolutely no treatment? 123 00:17:27,790 --> 00:17:30,700 Normally at this point we try to be constructive. 124 00:17:30,830 --> 00:17:34,000 We try to focus on what can be done. 125 00:17:34,080 --> 00:17:36,170 But in this case... 126 00:18:37,020 --> 00:18:40,110 When we get home, can we read a story? 127 00:18:40,230 --> 00:18:42,230 Of course, my darling. 128 00:18:47,280 --> 00:18:49,950 Lorenzino, let's go home. 129 00:21:24,020 --> 00:21:26,610 Mr Odone? I have a Dr Judalon on line three. 130 00:21:26,730 --> 00:21:30,150 - Good. Put him through. - They're waiting for you in the meeting. 131 00:21:30,280 --> 00:21:32,110 All right, thank you. 132 00:21:32,240 --> 00:21:33,530 - Hello? - Augusto? 133 00:21:33,660 --> 00:21:36,200 I just got off the phone to Gus Nikolais... 134 00:21:36,330 --> 00:21:39,750 ...a professor of neurology at the Institute of Childhood Diseases. 135 00:21:39,870 --> 00:21:46,340 If there is a so-called "world expert" on the leukodystrophies, Nikolais is it. 136 00:21:46,460 --> 00:21:48,840 - Ah, good. - I don't want to raise false hopes... 137 00:21:48,960 --> 00:21:53,680 ...but he's working on an experimental protocol based on a diet. 138 00:21:53,760 --> 00:21:55,300 Wonderful. 139 00:22:08,770 --> 00:22:10,780 Peanut butter, red meat, cheese... 140 00:22:10,900 --> 00:22:14,610 Unpeeled fruit, spinach, olive oil... But these are healthy foods. 141 00:22:14,740 --> 00:22:18,910 Yes, but they contain very long-chain saturated fats. 142 00:22:19,700 --> 00:22:21,040 I... 143 00:22:21,160 --> 00:22:25,960 I still do not understand why they are so harmful to Lorenzo. 144 00:22:26,080 --> 00:22:30,000 - Why are they so destructive? - How can spinach make the difference? 145 00:22:30,130 --> 00:22:34,720 The human body needs these fats in order to create cells... 146 00:22:34,840 --> 00:22:38,680 ...and the excess is burned off. That's normally, of course. 147 00:22:38,800 --> 00:22:42,930 But in the case of an ALD boy, these saturates can't be broken down... 148 00:22:43,060 --> 00:22:45,100 ...and they build up in the brain. 149 00:22:45,230 --> 00:22:50,650 And somehow this build-up strips the myelin covering. 150 00:22:50,820 --> 00:22:53,940 Yes, exactly. And, for the moment, we don't know why this is. 151 00:22:54,070 --> 00:22:58,200 But we feel that, by withdrawing the saturated fats from the diet... 152 00:22:58,320 --> 00:23:00,780 ...we will prevent them accumulating in the brain. 153 00:23:00,990 --> 00:23:02,450 And if we could? 154 00:23:02,580 --> 00:23:05,540 There's no way to reverse neurological damage. 155 00:23:05,660 --> 00:23:09,790 All we can hope for is to slow the cascade of symptoms. 156 00:23:09,920 --> 00:23:13,170 But if it's any consolation to you, you'll be helping us... 157 00:23:13,340 --> 00:23:17,680 ...understand the biochemistry of this heartless disease. 158 00:23:19,890 --> 00:23:23,470 So, can we enrol Lorenzo in our trial? 159 00:23:26,810 --> 00:23:28,850 I suppose so. 160 00:23:29,980 --> 00:23:34,780 Good. Then I will pass you over to our dietician... 161 00:23:34,900 --> 00:23:39,700 ...and meanwhile we should arrange some genetic counselling. 162 00:23:39,820 --> 00:23:43,580 Oh, Dr Nikolais, it's highly unlikely that we will have another child. 163 00:23:43,700 --> 00:23:47,040 No, but your sisters and their daughters may all be carriers. 164 00:23:47,160 --> 00:23:50,630 - We need to test them. - Only my family? What about his? 165 00:23:50,750 --> 00:23:55,260 No, no. ALD is passed only through the mother. 166 00:23:56,380 --> 00:23:58,430 But I thought you understood all this. 167 00:24:00,970 --> 00:24:04,770 We knew it was inborn, but... 168 00:24:05,470 --> 00:24:08,940 ...we assumed that meant a combination of our genes. 169 00:24:09,060 --> 00:24:11,520 That's true in other inherited diseases... 170 00:24:11,650 --> 00:24:14,150 ...but ALD is only carried on the female chromosome. 171 00:24:14,320 --> 00:24:16,320 Excuse me. 172 00:24:17,650 --> 00:24:20,870 Are you saying that Lorenzo got this directly from me? 173 00:24:22,030 --> 00:24:26,500 Well, in the sense that ALD is sex-linked, yes. 174 00:24:27,750 --> 00:24:30,000 It goes from mother to son. 175 00:24:31,580 --> 00:24:36,130 - And how did I get it? - The woman gets it from her mother. 176 00:24:36,260 --> 00:24:39,590 And if I inherited the defect, why don't I have the disease? 177 00:24:39,720 --> 00:24:43,220 No, the woman is only the carrier, nothing else. 178 00:24:43,720 --> 00:24:49,100 But with each conception, she has a 50-50 chance of passing on the defect. 179 00:24:49,230 --> 00:24:51,900 And when that happens... 180 00:24:52,060 --> 00:24:55,360 It's the cruellest kind of genetic lottery. 181 00:24:56,150 --> 00:24:57,990 - Lottery? - Yes, a clumsy word. 182 00:24:58,150 --> 00:25:02,280 I use it because it's... so arbitrary, you know. 183 00:25:02,410 --> 00:25:04,660 - No one is to blame. - Um... 184 00:25:05,580 --> 00:25:08,620 If Michaela's mother had this... 185 00:25:08,750 --> 00:25:11,170 ...and her mother's mother... 186 00:25:13,210 --> 00:25:15,250 ...why was there no warning? 187 00:25:15,840 --> 00:25:19,260 Well, I suppose if you went back into the family tree, you'd... 188 00:25:19,420 --> 00:25:24,800 But remember, a short time ago this disease didn't even have a name. 189 00:25:26,180 --> 00:25:30,350 Mrs Odone, you have enough to put up with without... 190 00:25:30,480 --> 00:25:32,940 You have nothing to blame yourself for. 191 00:25:36,900 --> 00:25:38,940 Thank you. 192 00:25:47,330 --> 00:25:48,870 It's not a good idea. 193 00:25:48,950 --> 00:25:53,960 All right, so she doesn't want me. What about Mother? She's packed and ready. 194 00:25:54,120 --> 00:25:57,290 Kenise, Michaela doesn't want anybody around. 195 00:25:57,420 --> 00:25:59,760 What about Father Killian? He can come. 196 00:25:59,880 --> 00:26:02,170 Hell, no. She's not even going to Mass now. 197 00:26:02,340 --> 00:26:05,340 - Deirdre, what is happening there? - Just let it rest, OK? 198 00:26:05,470 --> 00:26:07,850 No. What will they do for Lorenzo's birthday? 199 00:26:07,970 --> 00:26:10,310 - I'll call you. Bye. - No. Deirdre! 200 00:26:11,430 --> 00:26:15,150 This is wrong. More than ever she needs her family here. 201 00:26:15,270 --> 00:26:17,940 She doesn't want nobody. She's too angry. 202 00:26:18,070 --> 00:26:20,190 We cannot afford the time to be angry. 203 00:26:20,320 --> 00:26:22,490 Come on, look what she's dealing with. 204 00:26:22,650 --> 00:26:24,700 She does not have to deal with it alone. 205 00:26:24,820 --> 00:26:29,990 She feels incredibly alone and unlucky, like she's been singled out by God. 206 00:26:30,120 --> 00:26:33,210 - Oh, Deirdre! - Yes! Kenise is a carrier with two girls. 207 00:26:33,330 --> 00:26:37,710 Me, a carrier with no kids at all, and Mariah has a boy but she's not a carrier. 208 00:26:37,840 --> 00:26:40,000 So only Michaela gets this laid on her. 209 00:26:40,130 --> 00:26:45,430 - This did not happen only to Michaela. - Sure. You got two kids already, Odone. 210 00:26:45,550 --> 00:26:47,760 Mommy will make you something better: 211 00:26:47,890 --> 00:26:51,390 ...a big-boy fruit treat with five different colours. 212 00:26:59,730 --> 00:27:04,700 She waited all this time to have one child. She's not gonna have another. 213 00:27:26,840 --> 00:27:29,930 Francesco! Cristina! 214 00:27:32,770 --> 00:27:35,020 - Ah, buongiorno. - Oh, Francesco! 215 00:28:01,250 --> 00:28:02,380 - Cristina. - Michaela. 216 00:28:04,710 --> 00:28:05,800 Ciao. 217 00:28:16,180 --> 00:28:22,190 Everyone, this is Lorenzo's sister and brother, all the way from Rome. 218 00:29:04,270 --> 00:29:06,320 This does not make sense. 219 00:29:07,780 --> 00:29:10,400 Lorenzo's saturated fats have risen. 220 00:29:10,530 --> 00:29:15,660 We eliminate them from his diet, and in his blood they increase. 221 00:29:16,870 --> 00:29:21,210 If these very long-chain saturated fats are destroying his mind... 222 00:29:21,330 --> 00:29:23,880 ...then surely we should take him off the diet. 223 00:29:24,000 --> 00:29:26,340 Mr Odone, please be patient. 224 00:29:26,460 --> 00:29:31,300 Your son has been on the diet only six weeks. Wait until the end of the trial. 225 00:29:31,430 --> 00:29:36,260 Dr Nikolais, what about the other boys? What results are you seeing in them? 226 00:29:36,390 --> 00:29:39,270 As with Lorenzo, it's too early to tell. 227 00:29:39,390 --> 00:29:42,980 We need the study to run for the full six months. 228 00:29:43,150 --> 00:29:45,560 That will tell you what is obvious right now... 229 00:29:45,690 --> 00:29:50,360 ...that avoiding apple skins and pizza has no effect on this brutal disease. 230 00:29:50,490 --> 00:29:56,910 Now, please, Doctor, is there anyone out there who is chasing a definitive therapy? 231 00:29:57,700 --> 00:30:01,790 You judge us too hastily. The French have tried bone-marrow transplants... 232 00:30:01,910 --> 00:30:05,500 ...and in Boston we're about to try immunosuppression. 233 00:30:05,670 --> 00:30:09,630 - Why haven't we heard of these before? - The transplants were disastrous... 234 00:30:09,800 --> 00:30:12,880 ...and the immunosuppression is highly experimental. 235 00:30:13,010 --> 00:30:15,510 The protocol has been limited to six boys... 236 00:30:15,640 --> 00:30:19,060 ...all more profoundly afflicted than your son. 237 00:30:19,180 --> 00:30:22,810 For God's sake! How afflicted does he need to be? 238 00:30:22,980 --> 00:30:26,150 It's a school, Lorenzo, like any other school. 239 00:30:26,270 --> 00:30:31,440 - And it's full of doctors? - Yes. Some of the cleverest in America. 240 00:30:31,900 --> 00:30:34,240 - What colour is that cross? - Red. 241 00:30:35,320 --> 00:30:37,370 That's right. It's red. 242 00:30:38,700 --> 00:30:43,080 I'll speak to your parents for a second. Leah's gonna take your blood pressure. 243 00:30:43,210 --> 00:30:45,210 I'll be right back. 244 00:30:45,370 --> 00:30:48,040 I'll just put this around your arm. 245 00:30:49,170 --> 00:30:52,050 You've had this done before, haven't you? 246 00:30:53,720 --> 00:30:57,720 Look, it's important you both know exactly what's going on. 247 00:30:57,850 --> 00:31:00,930 Cyclophosphides are no picnic. This is chemotherapy. 248 00:31:01,060 --> 00:31:05,270 We're gonna be suppressing his immune system. It's very high-risk. 249 00:31:05,390 --> 00:31:09,020 We'll need to keep him here at least three weeks. 250 00:31:09,150 --> 00:31:12,690 Now, Lorenzo is still walking, talking and communicating. 251 00:31:12,860 --> 00:31:15,110 But that could all change. 252 00:31:15,240 --> 00:31:19,370 Now, knowing all this, do you still want us to go ahead with it? 253 00:31:21,620 --> 00:31:23,830 Given the alternatives, yes. 254 00:31:35,760 --> 00:31:39,680 The faculty is very grateful to Lorenzo for doing this. 255 00:31:52,230 --> 00:31:56,990 Ladies and gentlemen, this is Lorenzo Odone, whom I've spoken to you about. 256 00:31:57,110 --> 00:32:00,200 Now, young Mr Odone, you need to come with me. 257 00:32:03,200 --> 00:32:05,250 You are getting so big! 258 00:32:07,290 --> 00:32:11,040 Now, I'm gonna put you up here so we can all see you, OK? 259 00:32:11,170 --> 00:32:12,670 Attaboy. 260 00:32:14,630 --> 00:32:17,300 Ten weeks after diagnosis we observe hemianopia... 261 00:32:17,420 --> 00:32:19,720 ...with transient horizontal nystagmus. 262 00:32:19,840 --> 00:32:22,390 The pupillary light reflexes are still intact... 263 00:32:22,510 --> 00:32:24,470 ...and, as yet, there's no optic atrophy. 264 00:32:24,600 --> 00:32:28,140 However, there is evidence of early occipital-lobe involvement. 265 00:32:28,310 --> 00:32:32,860 Why are all these people here? 266 00:32:32,980 --> 00:32:38,860 - I beg your pardon, Lorenzo? - Why are all these people here? 267 00:32:38,990 --> 00:32:41,660 He asks why all these people are here. 268 00:32:42,870 --> 00:32:46,120 Well, they're all doctors... 269 00:32:46,250 --> 00:32:49,330 ...and they want to learn how to help other boys in the future. 270 00:32:49,460 --> 00:32:51,960 Other boys with the boo-boo? 271 00:32:52,380 --> 00:32:55,710 - Yes, darling. - Mm-hm. 272 00:32:56,300 --> 00:32:58,340 Thank you, Lorenzo. 273 00:33:00,430 --> 00:33:05,350 Now, in the scanning speech, we look for both ends of the pathology: 274 00:33:05,470 --> 00:33:09,770 ...centrally for the dysphasia, and peripherally for the dysarthria. 275 00:33:11,100 --> 00:33:14,360 Now, Lorenzo, would you walk for me, please? 276 00:33:16,030 --> 00:33:17,650 Attaboy. 277 00:33:18,900 --> 00:33:21,570 That's right. Hold my hands. 278 00:33:21,700 --> 00:33:23,740 That's right. 279 00:33:25,200 --> 00:33:29,910 Two months ago there was simply motor lag. Now note the characteristic gait. 280 00:33:30,040 --> 00:33:35,840 It's due mostly to hyperreflexia, but exacerbated by the encroaching paresis. 281 00:33:36,670 --> 00:33:38,760 You're doing very well. Keep coming. 282 00:33:38,880 --> 00:33:43,640 Only if you stop talking like that. 283 00:34:19,050 --> 00:34:21,970 Hello, Mr Odone. Have I got that right? 284 00:34:22,090 --> 00:34:24,840 - Odo-ne. - Odo-ne? I'm sorry. 285 00:34:24,970 --> 00:34:27,810 Ellard Muscatine. I'm with the ALD Foundation. 286 00:34:27,930 --> 00:34:32,230 We heard about your boy Lorenzo, and we'd like to offer you some help. 287 00:34:32,350 --> 00:34:34,270 You're a doctor? 288 00:34:34,440 --> 00:34:39,440 Doctor? Heck, no. I'm a machinist from Allequippa, PA, but I'm an ALD parent. 289 00:34:39,610 --> 00:34:45,200 This is my second time around, so I know exactly what you're going through. 290 00:34:46,370 --> 00:34:50,040 My wife Loretta and I, we run the foundation. 291 00:34:51,040 --> 00:34:55,370 We organise counselling, conduct seminars, fund research. 292 00:34:55,500 --> 00:34:58,000 We have 500 member families, not only American... 293 00:34:58,130 --> 00:35:02,340 ...but from Portugal, Israel, Japan, Australia... 294 00:35:02,460 --> 00:35:05,300 And we're growing all the time. 295 00:35:05,430 --> 00:35:09,430 We wanted you and Mrs Odone to know that you're not alone. 296 00:35:18,690 --> 00:35:21,690 Hi. Ellard Muscatine. Welcome to the conference. 297 00:35:21,820 --> 00:35:24,200 - Augusto Odone. - Michaela. 298 00:35:24,360 --> 00:35:27,200 Oh, very nice to meet you. Please come in. 299 00:35:28,410 --> 00:35:31,330 This is my wife Loretta, and these are the Odones. 300 00:35:31,490 --> 00:35:34,160 Great. I'm so happy you were able to come. 301 00:35:34,290 --> 00:35:37,580 Because I think a lot of it is denial. 302 00:35:37,710 --> 00:35:41,920 We don't want to say anything's going on. We're strong and we can handle it. 303 00:35:42,500 --> 00:35:46,680 But this is the place and this is the time to let it all out... 304 00:35:47,800 --> 00:35:50,050 ...let the barriers come down... 305 00:35:50,180 --> 00:35:53,430 ...and to share your feelings and get it off your chest. 306 00:35:53,560 --> 00:35:57,270 It's hard to believe that things can get worse. 307 00:35:59,060 --> 00:36:01,110 But they will. 308 00:36:02,480 --> 00:36:05,360 One thing nobody wants to talk about is what happens... 309 00:36:05,490 --> 00:36:08,450 ...or does not happen, between the two of you in the bedroom. 310 00:36:08,570 --> 00:36:10,700 A whole year we couldn't touch each other. 311 00:36:11,280 --> 00:36:16,000 My husband stood by me all the way but, oh my, does it test the men! 312 00:36:16,120 --> 00:36:19,250 - And the weak ones just up and go. - Even the strong ones leave. 313 00:36:19,420 --> 00:36:23,960 My guy hung in there when our first boy took sick. Then we had little Jake tested. 314 00:36:24,090 --> 00:36:27,380 Arlen wanted a whole bunch of boys, a whole ball team. 315 00:36:27,550 --> 00:36:31,140 He's gonna have 'em too... with some other gal. 316 00:36:32,560 --> 00:36:34,640 We'd like to thank the parents... 317 00:36:34,770 --> 00:36:38,810 ...who gave so generously to the fund for the immunosuppression trial. 318 00:36:38,940 --> 00:36:42,310 The doctors have said that this experiment contributed greatly... 319 00:36:42,440 --> 00:36:44,940 ...to the understanding of ALD. 320 00:36:45,070 --> 00:36:49,450 Betty and Tom Knowles, $250 in memory of Corey. 321 00:36:49,570 --> 00:36:53,660 Dr and Mrs Liebowitz, $500 in memory of Joel. 322 00:36:53,780 --> 00:36:58,750 Mr and Mrs Higgins, $1,000 in memory of Adrian and Julian. 323 00:36:58,910 --> 00:37:02,840 26 people have sent in recipes for the newsletter. 324 00:37:03,000 --> 00:37:06,630 Now, we still need ideas for snack foods and breakfast treats. 325 00:37:06,760 --> 00:37:09,720 Remember, all recipes should be low-fat... 326 00:37:09,840 --> 00:37:12,970 ...and use only the foods allowed on the institute diet. 327 00:37:13,100 --> 00:37:15,220 - Excuse me. - Yes, ma'am? 328 00:37:15,390 --> 00:37:17,560 Our son has complied with this diet... 329 00:37:17,680 --> 00:37:22,810 ...but his levels of saturated C24 and C26 have risen for two months in a row. 330 00:37:22,940 --> 00:37:25,320 That's exactly what's happened to Jaybird. 331 00:37:25,440 --> 00:37:29,280 Ah, well, perhaps before we talk about publishing cookbooks... 332 00:37:29,450 --> 00:37:34,410 ...we should ask ourselves if the diet is working at all. 333 00:37:36,330 --> 00:37:39,000 - Shouldn't we? - Damn right we should. 334 00:37:39,120 --> 00:37:41,170 This is not the way we do things here. 335 00:37:41,290 --> 00:37:46,210 But there are two families here with this paradox. Maybe there are more. 336 00:37:46,340 --> 00:37:48,420 Shouldn't we open it for discussion? 337 00:37:48,550 --> 00:37:52,010 - My boy's levels are rising. - Now there are three families. 338 00:37:52,130 --> 00:37:55,890 So maybe we should... Could we have a show of hands? 339 00:37:56,060 --> 00:37:58,350 Then we'll see how many families there are. 340 00:37:58,470 --> 00:38:02,770 You don't understand. This is a formal pilot study. It has to run for six months. 341 00:38:02,900 --> 00:38:05,810 We're not scientists. We don't interpret experiments. 342 00:38:05,940 --> 00:38:08,780 That's the solemn responsibility of the doctors. 343 00:38:08,900 --> 00:38:11,240 Come on, Ellard! Let's have a show of hands. 344 00:38:11,400 --> 00:38:13,450 No, that would be misleading. 345 00:38:13,570 --> 00:38:16,870 The medical folks call this kind of evidence anecdotal. 346 00:38:16,990 --> 00:38:20,370 - What's wrong with a show of hands? - It wouldn't have any meaning. 347 00:38:20,540 --> 00:38:23,290 - Excuse me. May I say something? - Sure. 348 00:38:23,420 --> 00:38:28,840 The only way that the doctors can get useful results is with a strict protocol... 349 00:38:28,960 --> 00:38:31,720 ...and statistical samples in a control group. 350 00:38:31,840 --> 00:38:34,590 And a proper time frame. Doctors have to be careful. 351 00:38:34,760 --> 00:38:37,970 Clinical trials must withstand a tremendous amount of scrutiny. 352 00:38:38,100 --> 00:38:40,770 This is the way that medical science works. 353 00:38:40,930 --> 00:38:44,600 That's the only way the scientists can get the information they need. 354 00:38:44,730 --> 00:38:50,900 So what you're saying is that our children are in the service of medical science. 355 00:38:50,990 --> 00:38:53,030 How foolish of me. I always assumed... 356 00:38:53,200 --> 00:38:57,030 ...that medical science was in the service of the sufferers. 357 00:38:57,200 --> 00:38:59,240 Yes. Uh, thank you. 358 00:38:59,990 --> 00:39:02,710 Uh, now I think it's time we get back to our agenda. 359 00:39:02,830 --> 00:39:08,540 Why? So we can discuss further salvaging our marriages and managing our grief? 360 00:39:08,670 --> 00:39:13,300 What about the children? No one here is discussing the children. 361 00:39:14,550 --> 00:39:16,840 Thank you. 362 00:39:16,970 --> 00:39:21,430 Now if Mary has nothing further to add, I would like to introduce Dr Chapel... 363 00:39:21,560 --> 00:39:24,440 ...to talk about the nasogastric tube and suction machine. 364 00:39:24,640 --> 00:39:28,060 Would you all join me in giving him a very warm welcome? 365 00:39:35,320 --> 00:39:39,240 Thank you, Madam President. Thank you, Ellard. Ladies and gentlemen... 366 00:39:58,840 --> 00:40:01,930 - Now hold my hand. - Yes, sweetie. 367 00:40:20,570 --> 00:40:24,080 - Now the story. - What story is that, sweetheart? 368 00:40:25,290 --> 00:40:28,540 La notte di San Lorenzo. 369 00:40:28,670 --> 00:40:30,460 San Lorenzo, who is...? 370 00:40:30,580 --> 00:40:32,800 My patron saint. 371 00:40:32,960 --> 00:40:36,170 And saint of my father's village. 372 00:40:36,300 --> 00:40:39,050 That's right. And what happened to him? 373 00:40:39,180 --> 00:40:41,640 He was in Rome. 374 00:40:41,760 --> 00:40:43,810 Mm-hm. 375 00:40:44,770 --> 00:40:47,310 And... I forgot. 376 00:40:48,640 --> 00:40:51,020 Well, many years ago... 377 00:40:51,150 --> 00:40:56,820 ...the bad guy says to him "Bring us the riches of your church." 378 00:40:57,780 --> 00:41:03,990 And Lorenzo, he brings them the beggars and the sick people... 379 00:41:05,200 --> 00:41:09,160 - ...and he says... - "These are our riches." 380 00:41:09,290 --> 00:41:10,710 Yes! 381 00:41:10,830 --> 00:41:15,500 - Bravo, Lorenzo, bravo. - That's wonderful, sweetheart. So clever. 382 00:41:15,670 --> 00:41:18,420 And tonight, August 10th, is... 383 00:41:19,130 --> 00:41:23,930 La notte di San Lorenzo. 384 00:41:24,640 --> 00:41:26,930 The night of the shooting stars. 385 00:41:27,060 --> 00:41:29,520 When anything can happen. 386 00:41:56,130 --> 00:41:57,590 Micha... 387 00:41:57,710 --> 00:41:59,760 Sh, sh, sh. 388 00:42:00,930 --> 00:42:04,970 When we first went to the Comoros, what did we do? 389 00:42:06,600 --> 00:42:09,350 - We got to know the country, right? - Yes. 390 00:42:09,480 --> 00:42:13,900 We studied. We got to know the language, resources, its laws. 391 00:42:14,020 --> 00:42:16,070 We studied, right? 392 00:42:16,940 --> 00:42:21,110 We should treat Lorenzo's illness like another country. 393 00:42:21,240 --> 00:42:24,200 - I don't quite see the analogy. - All right, all right. 394 00:42:24,320 --> 00:42:27,120 - ALD has many dimensions, right? - Yes. 395 00:42:27,240 --> 00:42:33,290 So in order to understand it, we need a command of genetics, biochemistry... 396 00:42:33,420 --> 00:42:36,630 ...microbiology, neurology, ology-ology... 397 00:42:36,750 --> 00:42:39,380 Augusto, we don't have time to go to medical school. 398 00:42:39,510 --> 00:42:43,720 Michaela, the doctors are in the dark. They're groping in the dark. 399 00:42:43,840 --> 00:42:47,300 They've got Lorenzo on a turvy-topsy diet. 400 00:42:47,430 --> 00:42:52,690 And that bloody immunosuppression is brutal and useless. 401 00:42:52,810 --> 00:42:57,770 Michaela, we should not have consigned him blindly into their hands. 402 00:42:58,770 --> 00:43:02,030 He should not suffer by our ignorance. 403 00:43:02,150 --> 00:43:06,450 We take responsibility. So... we read a little. 404 00:43:07,450 --> 00:43:10,120 And we go out and inform ourselves. 405 00:43:11,580 --> 00:43:16,330 But... to miss time with him while he can still speak to us... 406 00:43:16,460 --> 00:43:20,750 Yes, I know, I know. But he expects it of us. 407 00:44:08,050 --> 00:44:10,720 I want to take Lorenzo off the diet. 408 00:44:10,890 --> 00:44:14,560 He's been eating cardboard for 19 weeks, and what's it getting us? 409 00:44:14,680 --> 00:44:19,150 - And feed him what? - Normal foods. Things a child likes. 410 00:44:19,270 --> 00:44:22,530 Full of the long-chain fats that we know destroy his myelin? 411 00:44:22,650 --> 00:44:26,610 Look. On the diet, his blood fats are still rising. 412 00:44:26,740 --> 00:44:29,370 - Yes, I know, Michaela. - It doesn't make any sense. 413 00:44:29,490 --> 00:44:32,580 But we don't know enough. We don't know enough. 414 00:44:32,700 --> 00:44:35,000 We don't know it clearly enough. 415 00:44:35,160 --> 00:44:37,460 Here, Michaela, let me show you something. 416 00:44:37,580 --> 00:44:39,630 All right, here. 417 00:44:40,750 --> 00:44:42,800 Un piccolo acquaio. 418 00:44:42,920 --> 00:44:46,670 - A kitchen sink? - Yes, yes. Little kitchen sink. 419 00:44:46,800 --> 00:44:50,140 All right. Now here is the tap. Mm-hm? 420 00:44:50,260 --> 00:44:53,260 And here's the sink basin and the plughole, right? 421 00:44:53,390 --> 00:44:59,140 All right. Very long-chain saturated fats are introduced by what we eat, right? 422 00:44:59,270 --> 00:45:01,900 - Yes? - Now, also produced by the body... 423 00:45:02,020 --> 00:45:05,650 ...or manufactured by the body, these very same fats. 424 00:45:05,820 --> 00:45:08,530 - Biosynthesis. - Biosynthesis, right. 425 00:45:08,650 --> 00:45:10,910 Now, normally they are not harmful... 426 00:45:11,030 --> 00:45:15,830 ...because this enzyme eliminate the excess, right? 427 00:45:16,450 --> 00:45:21,130 But in Lorenzo, this enzyme is defective from genetics. 428 00:45:21,250 --> 00:45:24,420 His plughole is blocked, right? 429 00:45:24,550 --> 00:45:25,630 Yes. 430 00:45:25,750 --> 00:45:30,260 We know that very long-chain saturated fats are made up of carbon atoms. 431 00:45:30,380 --> 00:45:33,600 C2, 4, 6, 8... all the way up the chain, right? 432 00:45:34,470 --> 00:45:40,980 But in Lorenzo, the saturated C24 and C26... 433 00:45:41,100 --> 00:45:44,520 ...rise to four times the normal level. 434 00:45:46,440 --> 00:45:51,610 OK, now, here's where we have a little paradox, a mystery, OK? 435 00:45:52,950 --> 00:45:58,040 Why, when we reduce the dietary intake of saturated fats... 436 00:45:58,160 --> 00:46:03,330 ...does the level in our sink, which we would expect to go down, go up? 437 00:46:04,000 --> 00:46:07,710 So, logically, we should take him off the diet. 438 00:46:07,880 --> 00:46:10,130 Well, Michaela... 439 00:46:10,260 --> 00:46:13,260 ...just as logically, we should not. 440 00:46:13,390 --> 00:46:15,850 Because let's not do what the doctors did. 441 00:46:15,970 --> 00:46:18,810 Let's not act without knowing why. 442 00:46:20,020 --> 00:46:25,020 Why, when we turn off this tap, does the level in our sink rise? 443 00:46:27,900 --> 00:46:29,530 I married a plumber. 444 00:46:29,650 --> 00:46:34,570 You married a man with a simple mind, who asks simple questions, that's all. 445 00:46:34,700 --> 00:46:36,830 Here, Michaela. Brain food. 446 00:46:36,950 --> 00:46:39,250 - Come on. - Oh. Thank you. 447 00:47:38,180 --> 00:47:42,390 Polish rats! I think I have an explanation for the paradox. 448 00:47:42,520 --> 00:47:44,980 Lorenzo, kiss your clever mother. 449 00:47:45,640 --> 00:47:51,360 Polish rats with a fatty-acid storage disease. Let me use your kitchen sink. 450 00:47:53,690 --> 00:47:57,070 Here's our tap for what we eat. 451 00:47:59,070 --> 00:48:01,540 And here's our tap for biosynthesis. 452 00:48:01,660 --> 00:48:03,870 I see. Biosynthesis. Mm-hm. 453 00:48:05,250 --> 00:48:09,790 When the rats were deprived of a specific fat in their diet... 454 00:48:09,920 --> 00:48:13,840 ...their body cells compensated by overproducing it. 455 00:48:14,010 --> 00:48:17,340 - So if this holds true for humans... - Then the diet is useless... 456 00:48:17,470 --> 00:48:21,600 ...unless we can stop it overproducing, slow down biosynthesis, sì? 457 00:48:21,720 --> 00:48:26,270 Yes, and there's more. And for this, I deserve two kisses, my darling. 458 00:48:27,940 --> 00:48:31,820 In the summary, it talks about the concept of fatty-acid manipulation. 459 00:48:31,940 --> 00:48:33,860 - What's that? - Well... 460 00:48:33,980 --> 00:48:37,910 ...they stop the rats producing one kind of fat... 461 00:48:39,370 --> 00:48:41,780 ...by loading their diet with another kind. 462 00:48:41,910 --> 00:48:46,830 So maybe we could stop Lorenzo's body from producing C24 and C26... 463 00:48:46,960 --> 00:48:51,290 ...by loading his diet with another kind of fat, one that's less harmful. 464 00:48:51,420 --> 00:48:54,300 We should have this translated as soon as possible. 465 00:48:54,420 --> 00:48:57,510 I have some news too. 466 00:48:57,630 --> 00:48:59,840 It's a letter from Omouri. 467 00:48:59,970 --> 00:49:03,220 He wouldn't open it until you got home. 468 00:49:03,350 --> 00:49:05,810 - Omouri. - Yes. 469 00:49:11,730 --> 00:49:13,860 Michaela, by tomorrow morning... 470 00:49:13,980 --> 00:49:18,110 ...your Polish rats will be speaking to us in English. Hm? 471 00:49:19,910 --> 00:49:21,950 I've been thinking. 472 00:49:23,990 --> 00:49:28,250 I found that article by accident. I just as easily could have missed it. 473 00:49:28,370 --> 00:49:33,130 It was written by a Polish biochemist, who I'm sure knew nothing about ALD. 474 00:49:34,590 --> 00:49:38,420 Well, Michaela, still it gives us a new line of inquiry. 475 00:49:38,550 --> 00:49:40,430 Yes, but it could take months. 476 00:49:40,590 --> 00:49:44,510 And there will be other leads that take more time, and it's time we don't have. 477 00:49:44,680 --> 00:49:51,440 All these experts, working in isolation, each one on his own piece of the jigsaw. 478 00:49:53,440 --> 00:49:58,280 Of course, a symposium is the best way to accelerate the exchange of information. 479 00:49:58,400 --> 00:50:01,530 In that sense, it's a very good idea, Mr Odone. 480 00:50:01,660 --> 00:50:03,870 Only... May I say something? 481 00:50:04,870 --> 00:50:09,330 Have you any idea how many children in the United States die every year... 482 00:50:09,460 --> 00:50:12,420 ...from choking on French fries? 483 00:50:12,540 --> 00:50:17,000 Many more than from adrenoleukodystrophy. 484 00:50:17,130 --> 00:50:19,630 Ours is what is known as an orphan disease. 485 00:50:19,760 --> 00:50:23,720 It's too small to be noticed, too small to be funded... 486 00:50:23,840 --> 00:50:27,390 ...especially with the iron hand of Reaganomics. 487 00:50:27,560 --> 00:50:32,980 So while, as I say, this remains a very good idea, it's a luxury we can't afford. 488 00:50:33,100 --> 00:50:37,480 Well, we appreciate that, so we have prepared a budget... 489 00:50:37,610 --> 00:50:40,030 ...based on 40 participants for two days. 490 00:50:40,150 --> 00:50:44,530 We think it can be done for $35,000. My wife and I will raise the money. 491 00:50:44,660 --> 00:50:47,990 - We can't ask you to bear the cost. - Oh, no, no, no, no. 492 00:50:48,120 --> 00:50:50,750 That's the least of our concern. 493 00:50:50,870 --> 00:50:54,080 And of course, your institute will not be at risk... 494 00:50:54,210 --> 00:50:58,920 ...because the Odones will underwrite any shortfall. 495 00:51:00,260 --> 00:51:04,050 And we took the liberty of drafting an invitation list. 496 00:51:04,220 --> 00:51:07,810 Forgive me, Dr Nikolais. We wish to make two conditions. 497 00:51:07,930 --> 00:51:12,230 We would like the symposium to emphasise therapy... 498 00:51:12,390 --> 00:51:17,570 ...and Michaela and myself would like to participate in the discussion. 499 00:51:27,160 --> 00:51:31,200 Martha, I'm afraid we'll have to add to your workload... 500 00:51:31,330 --> 00:51:34,160 ...but it's in a very good cause. 501 00:51:34,290 --> 00:51:38,540 We've decided to convene the first symposium on ALD. 502 00:51:39,630 --> 00:51:42,380 We should notify the Muscatines. 503 00:51:42,510 --> 00:51:46,090 Of course. The foundation could help with the arrangement. 504 00:51:46,220 --> 00:51:50,680 They could even, perhaps... find some funds. 505 00:51:52,390 --> 00:51:56,850 How about we hook it to the back of the next Foundation Family Conference? 506 00:51:56,980 --> 00:52:00,070 - When would that be? - Next summer. 4th of July. 507 00:52:00,230 --> 00:52:03,150 - That's nine months away! - It will take us all that time... 508 00:52:03,320 --> 00:52:06,030 ...to invite those busy doctors and raise the money. 509 00:52:06,160 --> 00:52:09,450 - I don't think so. - What's your time frame, Mrs Odone? 510 00:52:09,580 --> 00:52:12,950 - Five weeks from now. November 10th. - That's not possible. 511 00:52:13,080 --> 00:52:14,790 Oh, I think it is. 512 00:52:14,910 --> 00:52:17,080 Pardon me, but what is the point of rushing? 513 00:52:19,630 --> 00:52:23,710 As ALD parents, we both know the answer to that inane question. 514 00:52:23,840 --> 00:52:27,010 If you want this to happen, you're going about it the wrong way. 515 00:52:27,130 --> 00:52:30,010 At least we are going about it. 516 00:52:30,140 --> 00:52:33,060 - Sorry, I don't understand. - He wants his diaper changed. 517 00:52:33,180 --> 00:52:36,480 Mrs Muscatine, look... Hello? 518 00:52:37,440 --> 00:52:39,400 Hello? 519 00:52:39,520 --> 00:52:42,530 They should be hung by their eyelashes. 520 00:52:42,650 --> 00:52:45,150 - They won't help? - It doesn't look that way. 521 00:52:45,280 --> 00:52:47,320 - Good boy. I'll take him. - No, I got it. 522 00:52:47,450 --> 00:52:50,370 - What'll you do? Mortgage the house? - Not until I have to. 523 00:52:50,490 --> 00:52:51,950 Michaela! 524 00:53:01,710 --> 00:53:05,130 I've spent two months pulling on the heartstrings of Washington... 525 00:53:05,260 --> 00:53:09,890 ...to raise money for multiple sclerosis, sudden infant death and cystic fibrosis. 526 00:53:10,010 --> 00:53:12,220 Then why exclude adrenoleukodystrophy? 527 00:53:12,390 --> 00:53:16,430 Because I also cover politics, the arts, women's issues and stuff... 528 00:53:16,600 --> 00:53:19,350 ...and my readership likes to have a little balance. 529 00:53:19,480 --> 00:53:24,230 I cannot do another medical story right now. Maybe in another month. 530 00:53:26,030 --> 00:53:28,700 Joyce, I think you should meet my son. 531 00:53:33,240 --> 00:53:35,290 My friends... 532 00:53:36,080 --> 00:53:38,580 This is so generous. 533 00:53:38,710 --> 00:53:42,670 You know, Augusto, our wives are eager to form a committee... 534 00:53:42,790 --> 00:53:46,550 - ...to, perhaps, help with hospitality. - Oh, wonderful, wonderful. 535 00:53:49,430 --> 00:53:53,050 Not only will we be saving money, but they'll be extremely well fed. 536 00:53:53,180 --> 00:53:57,180 For breakfast, French pastry, correct? Lunch, UN finger food. 537 00:53:57,350 --> 00:54:00,480 The British will do afternoon tea. 538 00:54:00,600 --> 00:54:04,190 And for dinner, I know a marvellous Italian cook. 539 00:54:07,150 --> 00:54:11,490 Are you needin' another pair of hands? I'll lick envelopes, serve coffee, whatever. 540 00:54:11,660 --> 00:54:15,410 And this is for your boy. I grow the best organic produce in Virginia. 541 00:54:15,580 --> 00:54:18,410 - Thank you. - You don't remember me! 542 00:54:18,540 --> 00:54:22,830 Wendy Gimble. Foundation Family Conference. I yelled louder than you. 543 00:54:22,960 --> 00:54:28,420 - Yes, of course. You have two boys. - We lost Jaybird, but Jake here is fine. 544 00:54:28,550 --> 00:54:30,630 We think what you're doing is fantastic. 545 00:54:30,760 --> 00:54:33,010 Hello, Jake. Come on in. Thank you. 546 00:54:33,140 --> 00:54:38,180 When I read about what you were doing, I thought "It's time we did something." 547 00:54:38,310 --> 00:54:42,060 - Please, come in and meet the others. - Is that Lorenzo? 548 00:54:42,230 --> 00:54:46,440 Yes. Lorenzo, this is Jake. He's a young man of your age. 549 00:54:46,570 --> 00:54:51,360 Look, Lorenzo, a great big pumpkin. Let's go down and feel how big it is. 550 00:54:55,780 --> 00:54:58,160 What, sweetheart? 551 00:55:00,660 --> 00:55:03,870 I'm sorry, Lorenzo. Let's try that again. 552 00:55:27,110 --> 00:55:29,650 This morning I could still understand him. 553 00:55:35,820 --> 00:55:40,870 When we can clone the ALD gene, we can identify the deficient enzyme... 554 00:55:41,000 --> 00:55:44,370 ...mass-produce the gene, implant it into ALD sufferers... 555 00:55:44,500 --> 00:55:48,630 - ...and normalise their metabolism. - How long would that take? 556 00:55:53,720 --> 00:55:55,550 Seven to ten years. 557 00:55:55,680 --> 00:55:58,550 You see, science has its own time... 558 00:55:58,680 --> 00:56:02,220 ...and, very often, any new advance can be a matter of serendipity. 559 00:56:02,350 --> 00:56:06,150 For the last six months, all our ALD boys have been on a regimen... 560 00:56:06,270 --> 00:56:10,480 ...which excludes saturated C24 and 26. 561 00:56:11,280 --> 00:56:14,200 But despite this restriction in the diet... 562 00:56:14,320 --> 00:56:18,530 ...these long-chain fatty acids have remained the same... 563 00:56:18,660 --> 00:56:21,540 ...in some cases even increasing. 564 00:56:22,290 --> 00:56:27,710 Now, this compensating increase I put down to biosynthesis. 565 00:56:27,830 --> 00:56:31,170 But, Gus, if you could maintain the diet... 566 00:56:31,300 --> 00:56:34,970 ...and somehow inhibit biosynthesis, you'd have a therapy. 567 00:56:35,090 --> 00:56:37,550 No, you wouldn't quite have a therapy. 568 00:56:37,680 --> 00:56:41,760 You would have a way of lowering the fatty acids to normal. 569 00:56:49,690 --> 00:56:53,150 If you wish to inhibit biosynthesis... 570 00:56:53,280 --> 00:56:56,950 ...have you considered fatty-acid manipulation? 571 00:57:06,410 --> 00:57:11,500 There is some literature, a rat study, Russian or Polish. 572 00:57:11,630 --> 00:57:14,460 Polish. Straszak. I have copies right here. 573 00:57:14,590 --> 00:57:18,800 Polish Journal of Biological Sciences 1979, Volume II. 574 00:57:18,970 --> 00:57:23,220 They loaded the diet with one fat and decreased biosynthesis of another. 575 00:57:23,350 --> 00:57:26,310 Yes, I remember this article. 576 00:57:26,430 --> 00:57:31,520 And also in Canada, they have seen the same thing in miniature swine. 577 00:57:31,650 --> 00:57:34,940 As a matter of fact, I've seen it in human cells. 578 00:57:35,070 --> 00:57:37,110 In human ALD cells. 579 00:57:37,190 --> 00:57:41,990 From patients with ALD, I took fibroblasts - skin cells, OK? 580 00:57:42,120 --> 00:57:44,290 Each one carries the same genetic defect. 581 00:57:44,450 --> 00:57:49,250 I incubated them with oleic acid and reduced the saturated C24 and C26... 582 00:57:49,420 --> 00:57:52,000 - ...by more than 50 per cent. - Excuse me, Doctor. 583 00:57:52,130 --> 00:57:54,840 You said oleic acid? 584 00:57:55,250 --> 00:57:58,550 Yes, monounsaturated C18, the main component of olive oil. 585 00:57:58,720 --> 00:58:02,050 - Surely this is the basis for a therapy. - Slow down. 586 00:58:02,180 --> 00:58:06,270 These are studies in cultured cells. We don't know it'll work in a human being. 587 00:58:06,390 --> 00:58:10,480 Well, then, take the olive oil and try it in a patient and see... 588 00:58:10,600 --> 00:58:15,440 Augusto, olive oil is forbidden in the diet: C24, C26. 589 00:58:15,570 --> 00:58:19,400 Yes, but then use whatever Dr Rizzo fed his fibroblast. 590 00:58:19,530 --> 00:58:24,620 Pure oleic acid would be very toxic to an intact organism, an animal or human. 591 00:58:24,740 --> 00:58:29,580 It would need to be the triglyceride form, which is edible, but that's not available. 592 00:58:29,710 --> 00:58:34,420 All right, can't you take ordinary olive oil and extract the C24 and C26? 593 00:58:34,540 --> 00:58:39,510 You could, but it's a very complicated procedure and would be very expensive... 594 00:58:39,630 --> 00:58:42,890 ...especially to produce the quantities for a clinical trial. 595 00:58:43,010 --> 00:58:45,220 Have you contacted chemical companies? 596 00:58:45,350 --> 00:58:47,390 No one will tool up for that. 597 00:58:47,470 --> 00:58:52,060 Not for an experiment, not for something with no market. 598 00:58:52,190 --> 00:58:54,650 - Then you haven't tried? - No. 599 00:58:59,740 --> 00:59:04,990 If we were able to get triglyceride, then we can change all that, right? 600 00:59:05,120 --> 00:59:08,040 Yes. It has to be triglyceride to be edible. 601 00:59:08,160 --> 00:59:10,250 Edible form. Triglyceride. 602 00:59:10,370 --> 00:59:12,370 No one here can help you. 603 00:59:12,500 --> 00:59:14,880 Then do you know anyone else who does? 604 00:59:15,040 --> 00:59:17,250 I'll send you back to the switchboard. 605 00:59:17,380 --> 00:59:21,550 - Which extension, please? - Research and development. 606 00:59:21,670 --> 00:59:22,680 R&D. 607 00:59:22,800 --> 00:59:26,050 - I need a triglyceride form of oleic acid. - Your name, Doctor? 608 00:59:26,180 --> 00:59:28,600 - No, I'm not a doctor. - Are you with a company? 609 00:59:28,720 --> 00:59:32,060 No, I am not with any company. I'm the mother of a sick child. 610 00:59:32,230 --> 00:59:33,560 - A mother? - That's right. 611 00:59:33,690 --> 00:59:35,440 - And you want...? - Oleic acid. 612 00:59:35,560 --> 00:59:37,190 - The lines are busy. - I'll wait. 613 00:59:37,360 --> 00:59:40,690 Papa makes you spaghetti al pomodoro... 614 00:59:40,820 --> 00:59:45,610 ...seasoned with basilico, the royal herb for our prince. 615 00:59:45,740 --> 00:59:48,280 Badabib, badabab, badaboom. 616 00:59:49,870 --> 00:59:53,710 Come on, Lorenzo, take a little bit. That's a boy. 617 00:59:53,830 --> 00:59:56,380 The best lead came from the symposium: 618 00:59:56,500 --> 01:00:00,880 ...oleic acid in the triglyceride form. Now it's our only hope for Lorenzo. 619 01:00:01,010 --> 01:00:04,760 Don't fret, Mrs Odone. You will hear from him within the hour. 620 01:00:04,840 --> 01:00:07,600 - You can be sure of it. - Thank you. That's 301... 621 01:00:07,720 --> 01:00:09,640 Don't worry, I have the number. 622 01:00:09,760 --> 01:00:13,060 - Thank you very much. - You're welcome. Bye-bye. 623 01:00:17,060 --> 01:00:23,280 So, as the swallowing reflexes weaken, he's less able to handle his own saliva. 624 01:00:24,070 --> 01:00:29,120 We'll all have to be pretty vigilant. We really have to stay on top of this thing. 625 01:00:29,280 --> 01:00:34,160 If we allow any saliva to get down into his respiratory tract, we block his airway. 626 01:00:34,290 --> 01:00:36,370 We don't wanna do that. 627 01:00:36,540 --> 01:00:38,630 Here we go. Put your thumb over the valve. 628 01:00:38,750 --> 01:00:41,250 When you don't want suction, release your thumb. 629 01:00:41,380 --> 01:00:45,930 Hi. It's ProtoChem again. I'll connect you to our Mr Pellerman. 630 01:00:53,270 --> 01:00:57,310 - I believe you want some oleic acid. - Yes, in triglyceride form. 631 01:00:57,440 --> 01:01:01,650 You're lucky. We're testing a glycerol trioleate here as an industrial lubricant. 632 01:01:01,770 --> 01:01:05,150 Industrial? Then... is it fit for human consumption? 633 01:01:05,280 --> 01:01:07,490 I don't see why not. It's a purified olive oil. 634 01:01:07,610 --> 01:01:12,830 Without saturates? Pure monounsaturated C18 in triglyceride form? 635 01:01:12,950 --> 01:01:14,620 - Yes, ma'am. - You're sure? 636 01:01:14,750 --> 01:01:17,960 It happens we have one bottle here, sitting idle on the shelf. 637 01:01:18,080 --> 01:01:21,290 Marvellous! How can we get our hands on it? 638 01:01:21,420 --> 01:01:23,840 - Sorry. Go ahead. - How can we get our hands on it? 639 01:01:25,300 --> 01:01:27,300 This is... beautiful. 640 01:01:28,090 --> 01:01:31,890 - And it's entirely harmless? - Gus, you're talking to an Italian. 641 01:01:32,010 --> 01:01:36,600 - It's only olive oil. - Yes, that's harmless. It's like... sugar. 642 01:01:36,730 --> 01:01:39,560 And yet, to a diabetic, sugar can be lethal. 643 01:01:39,730 --> 01:01:44,780 You see, the trouble is we don't know to what extent Lorenzo can metabolise fats. 644 01:01:44,900 --> 01:01:50,200 Yes, well, Gus, it's been seven months since Lorenzo was diagnosed. 645 01:01:50,320 --> 01:01:52,990 Now he is silent. He's immobile. 646 01:01:53,990 --> 01:01:56,120 Augusto, I am a scientist... 647 01:01:56,250 --> 01:01:59,580 ...and I'm of absolutely no use to you whatever... 648 01:01:59,710 --> 01:02:02,130 ...unless I can maintain my objectivity. 649 01:02:02,250 --> 01:02:05,550 And I am not a scientist. I am a father. 650 01:02:05,670 --> 01:02:10,300 And nobody can tell me what dressing I put on my kid's salad, OK? 651 01:02:12,760 --> 01:02:14,810 Augusto... 652 01:02:15,470 --> 01:02:19,060 This science of medicine. You know, it's not like physics. 653 01:02:19,190 --> 01:02:22,440 There's no mathematical certainty. 654 01:02:22,560 --> 01:02:28,400 And because we deal with human beings who suffer, it can appear heartless. 655 01:02:28,570 --> 01:02:30,610 I know. 656 01:02:35,030 --> 01:02:39,370 You realise that any collaboration of mine would have to be unofficial? 657 01:02:39,500 --> 01:02:43,920 Sì, sì, of course. Now, the dose. We think 40 grams a day. 658 01:02:44,040 --> 01:02:47,090 - That's too much. Say 30. - 30? 659 01:02:47,210 --> 01:02:51,130 Yes. Any more than that might damage your son's liver. 660 01:02:51,260 --> 01:02:53,510 Darling, they're about to start. 661 01:02:56,350 --> 01:03:00,640 We're going to send this blood away to establish a baseline, my brave boy. 662 01:03:00,770 --> 01:03:04,980 Because today we all start the fight against the boo-boo. 663 01:03:05,150 --> 01:03:07,530 There. All done. 664 01:03:10,610 --> 01:03:14,950 Lorenzino, this year we celebrate Thanksgiving a little early... 665 01:03:15,070 --> 01:03:19,200 ...with a fine barracuda like we used to eat in the Comoros, huh? 666 01:03:19,330 --> 01:03:22,920 And Papa has cooked it with the aromatic dill. 667 01:03:23,040 --> 01:03:25,080 And now... 668 01:03:26,340 --> 01:03:30,970 ...we add the special olive oil which Mama found. 669 01:03:31,090 --> 01:03:33,130 Hm? All right? 670 01:03:35,090 --> 01:03:37,100 There we go. 671 01:03:37,220 --> 01:03:38,890 Deirdre. 672 01:03:39,010 --> 01:03:42,020 All right, Lorenzo. Here we go. 673 01:04:07,790 --> 01:04:12,970 - There we go. - You did good, buddy boy. Real good. 674 01:04:13,090 --> 01:04:17,550 Your Aunt Deirdre means "well", darling. In this house, we cherish our adverbs. 675 01:04:17,680 --> 01:04:21,350 I expect you to do the same when you get your voice back. 676 01:05:02,100 --> 01:05:05,180 - Hello? - Mrs Odone, this is Dr Nikolais's office. 677 01:05:05,310 --> 01:05:09,860 I have Lorenzo's results. There's been a small drop in the saturated C24 and 26. 678 01:05:09,980 --> 01:05:12,110 - About 15 per cent. - 15 per cent? 679 01:05:12,230 --> 01:05:16,650 Dr Nikolais said not to get carried away. It could be a spontaneous variation. 680 01:05:16,780 --> 01:05:20,740 - Am I allowed a tiny squeak of joy? - We'll know more next month. 681 01:05:20,870 --> 01:05:22,080 Thank you. 682 01:05:46,140 --> 01:05:48,140 Michaela! 683 01:05:54,320 --> 01:05:57,030 Augusto! Get something to hold down his tongue! 684 01:05:57,150 --> 01:05:59,150 Oh, my baby! 685 01:06:07,450 --> 01:06:11,500 So, this is a kind of seizure, like epilepsy? 686 01:06:11,630 --> 01:06:16,210 No, not a seizure. It's a paroxysm. It's triggered by saliva in the windpipe. 687 01:06:16,340 --> 01:06:18,630 - But we suction him. - Regularly. 688 01:06:18,760 --> 01:06:21,800 I know, but even so, some saliva gets caught in the trachea. 689 01:06:21,930 --> 01:06:24,810 In any other child, a cough would get rid of it. 690 01:06:24,930 --> 01:06:27,810 In Lorenzo, it becomes a scrambled chain of reflexes... 691 01:06:27,930 --> 01:06:31,190 ...that amplifies into what you have just seen. 692 01:06:31,310 --> 01:06:34,110 If this happens again, what can we do about it? 693 01:06:34,230 --> 01:06:36,480 Just help him try to ride it out. 694 01:06:37,360 --> 01:06:40,910 We're all flying blind here, folks. The best I can offer is sedation. 695 01:06:41,070 --> 01:06:46,870 But if it's not epilepsy, then he's aware of what's happening while it's going on? 696 01:06:46,990 --> 01:06:49,040 Well, it's possible. 697 01:06:49,790 --> 01:06:53,880 And if he has another episode, we could talk him through it. 698 01:06:54,000 --> 01:06:56,130 It's possible, Michaela. 699 01:06:56,300 --> 01:06:58,340 It's possible. 700 01:07:00,550 --> 01:07:04,220 - Sì, sì. A 50 per cent drop, right? - That's correct. 701 01:07:04,350 --> 01:07:06,220 Thank you very much. Thank you! 702 01:07:06,390 --> 01:07:08,640 Fantastico! Fantastico! 703 01:07:19,490 --> 01:07:24,450 I very well understand that we are not scientists, but we have observed this... 704 01:07:24,570 --> 01:07:29,080 Let us do it our way, Augusto. Trust us. 705 01:07:29,200 --> 01:07:31,290 - I've got to go. - OK. Thank you. 706 01:07:31,410 --> 01:07:32,870 Goodbye. 707 01:07:33,000 --> 01:07:37,290 - Nikolais says it's very interesting. - Interesting? A 50 per cent drop? 708 01:07:37,420 --> 01:07:41,170 But it's too early to draw a conclusion. Rizzo might consider a trial. 709 01:07:41,300 --> 01:07:44,550 And he asked us not to tell the other parents. 710 01:07:44,680 --> 01:07:47,350 - What?! - It's immoral. Something finally... 711 01:07:47,470 --> 01:07:50,980 - The parents have to know. - We'll tell them. They can judge. 712 01:07:51,140 --> 01:07:54,730 - The foundation has a mailing list. - We'll call the Muscatines. 713 01:07:54,850 --> 01:07:57,940 I can eat crow in the name of a good cause. 714 01:08:00,820 --> 01:08:02,860 Michaela... 715 01:08:05,820 --> 01:08:10,490 Mm! Delicious! That was worth driving 300 miles for. 716 01:08:10,660 --> 01:08:14,540 - Now, my friends... dessert. - Here, let me move this. 717 01:08:15,710 --> 01:08:18,540 And Loretta... a little science, hm? 718 01:08:19,380 --> 01:08:21,420 Thank you. 719 01:08:22,340 --> 01:08:24,380 "Dear ALD parents..." 720 01:08:33,310 --> 01:08:37,520 - You want us to send this out? - Yes. We'll pay for copying and postage. 721 01:08:38,190 --> 01:08:40,230 But you're advocating a therapy. 722 01:08:40,360 --> 01:08:44,860 No, we're merely reporting a positive advancement in the diet. 723 01:08:44,990 --> 01:08:47,620 It would be wrong to keep it from the other parents. 724 01:08:47,740 --> 01:08:51,830 Mrs Odone, we have an advisory board of eminent doctors... 725 01:08:51,950 --> 01:08:54,080 ...and we take our guidance from them. 726 01:08:54,210 --> 01:08:56,580 They are the ones with the medical degrees. 727 01:08:56,710 --> 01:09:00,590 Yes, my dear, but Nikolais already knows about this... 728 01:09:00,710 --> 01:09:05,170 - ...and the wretched man does nothing. - Because he is a responsible scientist. 729 01:09:05,300 --> 01:09:10,010 - No, because he has another agenda. - All right, Michaela. Calmati, calmati. 730 01:09:10,140 --> 01:09:12,560 You know, Loretta, sometimes... 731 01:09:13,930 --> 01:09:19,480 ...the interest of the scientists is not the same as the interest of the parents. 732 01:09:19,610 --> 01:09:23,730 Scientists are human and sometimes they can be wrong. 733 01:09:23,860 --> 01:09:29,320 As president of the foundation, you represent us, the families. 734 01:09:29,450 --> 01:09:34,410 And you serve the families best by informing them. 735 01:09:34,540 --> 01:09:39,920 And all we ask is that you please send this letter to them, that's all. 736 01:09:40,040 --> 01:09:45,880 Our parents suffer enough without being made the victims of false hopes. 737 01:09:46,010 --> 01:09:50,220 We can't give credence to every jerk with a pocketful of apricot seeds. 738 01:09:50,340 --> 01:09:54,310 Excuse me, this is not Laetrile. We're talking about an extract of olive oil... 739 01:09:54,470 --> 01:09:57,890 ...an idea that was put forth by the scientists at the symposium. 740 01:09:58,020 --> 01:10:00,060 And it works in Lorenzo. 741 01:10:00,190 --> 01:10:03,730 It works in an ALD boy to a degree that is significant. 742 01:10:03,860 --> 01:10:08,740 - Very significant. - Other parents have a right to know. 743 01:10:09,280 --> 01:10:13,660 We know that this is a deadly disease, so they have a right to choice. 744 01:10:13,830 --> 01:10:17,710 And if they feel as we do, they can put pressure on the doctors. 745 01:10:17,910 --> 01:10:22,670 Because, as parents, we should challenge these guys. We push them. 746 01:10:22,790 --> 01:10:29,760 Unless someone is willing to question, to provoke, how would there be progress? 747 01:10:29,880 --> 01:10:31,840 Well, we feel there is progress. 748 01:10:31,970 --> 01:10:36,890 Loretta, we know that, but all we say is start a dialectic with the doctors. 749 01:10:37,020 --> 01:10:38,890 Are you telling us what to do? 750 01:10:39,020 --> 01:10:41,350 We're asking you to disseminate information. 751 01:10:41,480 --> 01:10:44,900 You gonna teach the doctors? Where we come from, that's arrogance. 752 01:10:45,020 --> 01:10:47,320 - Arrogance! - Yes. 753 01:10:47,480 --> 01:10:49,740 It is... arrogance. 754 01:10:50,450 --> 01:10:54,990 It comes from the Latin word... arrogare. 755 01:10:55,120 --> 01:10:58,120 You know it? You know the root? What it means? 756 01:10:58,250 --> 01:11:01,870 It means to claim for oneself. 757 01:11:02,000 --> 01:11:06,130 That's the root. It means to claim for oneself. 758 01:11:07,340 --> 01:11:11,630 And I claim the right to fight for my kid's life. 759 01:11:11,760 --> 01:11:17,470 And no doctor, no researcher, no bloody foundation, has the right to stop me... 760 01:11:17,600 --> 01:11:20,850 ...from asking questions which might help me save him! 761 01:11:21,230 --> 01:11:25,560 And you have no right to stop the sharing of information! 762 01:11:25,690 --> 01:11:28,940 - So you think about it! - Our job is to be there for the parents. 763 01:11:29,070 --> 01:11:31,490 To comfort them, not to get them stirred up. 764 01:11:31,610 --> 01:11:35,780 If the doctors think you have something, they will tell us in their own good time. 765 01:11:35,910 --> 01:11:39,950 - Their own good time is not our time. - What? They are so powerful... 766 01:11:40,080 --> 01:11:43,330 They are so powerful that you would be silent? 767 01:11:43,500 --> 01:11:45,290 They are not gods! 768 01:11:45,420 --> 01:11:48,840 Do you know, this acquiescence is so disgusting! 769 01:11:48,960 --> 01:11:51,470 You think you know so much. Let me tell you something! 770 01:11:51,630 --> 01:11:55,300 When Michael got sick, we looked for anything that might help him. 771 01:11:55,430 --> 01:11:58,310 And the best thing that happened? He was taken quickly. 772 01:11:58,430 --> 01:12:02,100 Now, Tommy... he has lasted three years. 773 01:12:02,230 --> 01:12:05,150 For two of 'em, he's been without his sight, his mind... 774 01:12:05,270 --> 01:12:09,400 ...everything that makes him a human being. He's a vegetable! 775 01:12:11,570 --> 01:12:16,490 Oh, boy! If you would stop all this denial, you wouldn't do a thing... 776 01:12:16,620 --> 01:12:21,580 ...to prolong your boy's suffering and indignity one minute longer. 777 01:12:29,960 --> 01:12:35,090 Has it occurred to you that maybe he doesn't want to be around any more? 778 01:12:36,760 --> 01:12:38,800 Sì, sì. Thank you. 779 01:12:46,600 --> 01:12:48,690 It has to be a mistake. 780 01:12:48,810 --> 01:12:51,940 No, Nikolais says not. 781 01:12:52,070 --> 01:12:54,320 - Augusto... - Oh, sorry. 782 01:12:56,780 --> 01:13:00,240 - Should we risk raising the dose? - No, he's too fragile. 783 01:13:00,370 --> 01:13:02,790 Any more might harm his liver. 784 01:13:27,810 --> 01:13:30,610 Lorenzo, listen to Mommy. 785 01:13:30,730 --> 01:13:33,690 You're going to have to be brave as only you know how. 786 01:13:33,820 --> 01:13:36,360 We're gonna count together, you and I, all right? 787 01:13:36,530 --> 01:13:39,990 Listen to Mommy's voice and the boo-boo will let go of you. 788 01:13:40,120 --> 01:13:42,160 One, two... 789 01:13:42,830 --> 01:13:45,040 ...three, four... 790 01:14:05,850 --> 01:14:07,890 Michaela... 791 01:14:09,560 --> 01:14:14,820 You know, I've been a nurse for 18 years, eight of them spent in ICU paediatrics. 792 01:14:14,940 --> 01:14:19,070 And I know that you can't always play by the rules, but... 793 01:14:19,240 --> 01:14:21,070 ...this boy shouldn't be at home. 794 01:14:21,280 --> 01:14:25,620 He should be placed in a properly equipped hospital. 795 01:14:27,120 --> 01:14:29,420 Why don't you say what you mean? 796 01:14:29,540 --> 01:14:32,250 I'm not comfortable with this situation. 797 01:14:33,500 --> 01:14:38,420 Well, Lorenzo and I aren't comfortable with your lack of comfort. 798 01:14:39,630 --> 01:14:42,470 I can't continue to be a party to this. 799 01:14:44,140 --> 01:14:46,640 I gotta give you my notice. I'll stay until... 800 01:14:46,810 --> 01:14:49,640 - No, you should finish tonight. - Michaela! Go easy. 801 01:14:49,770 --> 01:14:53,610 Your agency will receive a cheque in the morning. 802 01:14:53,770 --> 01:14:57,360 Look, Ruth. We're all a little strung-out here. 803 01:14:57,480 --> 01:15:02,160 She's talking about placement, Deirdre. It's a euphemism for "hospice". 804 01:15:02,280 --> 01:15:06,450 Lorenzo has enough to endure. We will not expose ourself to doubt and despair. 805 01:15:06,580 --> 01:15:09,290 She's exhausted. That's all it is. 806 01:15:09,410 --> 01:15:13,580 Look, I don't know. Somebody had to say something. 807 01:15:13,710 --> 01:15:15,750 Good luck. 808 01:16:11,020 --> 01:16:13,390 Buonasera, Odone. 809 01:16:13,520 --> 01:16:15,730 Look what I found. 810 01:16:15,860 --> 01:16:18,400 Look at this. Would you look at this! 811 01:16:20,360 --> 01:16:22,360 Let me show you. 812 01:16:23,360 --> 01:16:25,570 Where are we? Right here. 813 01:16:29,790 --> 01:16:33,370 That was June of '83, just 21 months ago. 814 01:16:40,380 --> 01:16:44,970 You know, it's time you guys take it easy on yourselves. 815 01:16:45,090 --> 01:16:47,140 Deirdre... 816 01:16:48,510 --> 01:16:51,770 If we knew why it only work halfway... 817 01:16:53,640 --> 01:16:56,940 ...then we might know what to do next. 818 01:16:57,100 --> 01:17:01,530 Augusto, how many mornings have I found you asleep... 819 01:17:01,650 --> 01:17:05,150 ...under a pile of research papers with the lights still on? 820 01:17:05,320 --> 01:17:08,780 And then you wake up and drag yourself into the office. 821 01:17:08,910 --> 01:17:10,870 How long can you keep this up? 822 01:17:10,990 --> 01:17:14,250 If you get sick - and you will - what are you gonna do for money? 823 01:17:14,330 --> 01:17:18,000 What are you telling me? For God's sake, he is my kid. 824 01:17:18,130 --> 01:17:24,130 Yeah, so are Cristina and Francesco, and it's been a year since you've seen them. 825 01:17:24,260 --> 01:17:26,300 Listen to me, OK? 826 01:17:28,590 --> 01:17:32,100 There has to be a life beyond Lorenzo. 827 01:17:33,270 --> 01:17:36,440 What are you telling me? That I should give up on this now? 828 01:17:36,560 --> 01:17:40,270 Oh, man. We both know that even if you get his levels down to normal... 829 01:17:40,400 --> 01:17:42,480 ...his brain can't fix itself. 830 01:17:42,610 --> 01:17:46,280 How much myelin does he have left? Do you ever ask yourself that? 831 01:17:46,400 --> 01:17:50,780 - Deirdre, now that's enough. - No. Don't bullshit me. 832 01:17:50,910 --> 01:17:54,410 I know you do... but she doesn't. 833 01:17:55,910 --> 01:17:57,960 Not ever. 834 01:17:59,120 --> 01:18:03,880 You have to help me with her. She doesn't eat, she doesn't sleep. 835 01:18:04,960 --> 01:18:08,050 I'm afraid for her. I think she's losing it. 836 01:18:09,720 --> 01:18:13,930 You've seen how she is with him. She just can't let him go. 837 01:18:14,060 --> 01:18:16,100 Poor Deirdre. 838 01:18:16,850 --> 01:18:20,270 Spoken as only a woman who's never had a child could speak. 839 01:18:20,440 --> 01:18:23,400 Michaela, Deirdre was speaking out of love. 840 01:18:23,520 --> 01:18:25,990 I am only telling you what I see. 841 01:18:26,110 --> 01:18:30,110 For both your sakes, there has to be life beyond Lorenzo. 842 01:18:30,240 --> 01:18:36,000 Do you think that he has no voice? No will to live? He asserts it through us! 843 01:18:36,120 --> 01:18:38,710 If you can't see that, there's no place for you here! 844 01:18:38,830 --> 01:18:42,170 Michaela, for God's sake, she is your sister! 845 01:18:42,290 --> 01:18:47,210 - And I think you're losing it, Michaela. - Well, then, I think you should go. 846 01:18:48,550 --> 01:18:51,720 Augusto, help her pack her bags. I'm going back to our son. 847 01:18:56,100 --> 01:18:58,560 You think I'm crazy because I speak for our son?! 848 01:19:11,820 --> 01:19:15,160 I am so sorry. I never wanted this to happen. 849 01:19:15,280 --> 01:19:20,830 How can I? How can I enjoy anything when he enjoys nothing? 850 01:19:20,960 --> 01:19:24,840 How can you talk to me about loving him when you trivialise him into... 851 01:19:28,800 --> 01:19:30,760 No! No! 852 01:19:50,440 --> 01:19:52,820 - Mrs Odone! - Get a tube. 853 01:19:52,950 --> 01:19:54,620 Do you have the tube? 854 01:19:54,740 --> 01:19:57,580 Don't nod, Nancy Jo. Say "yes". My attention's on Lorenzo. 855 01:19:57,700 --> 01:20:01,120 Darling, look at me. Listen to Mommy's voice. We're gonna count. 856 01:20:01,290 --> 01:20:04,170 One, two, three, four... 857 01:20:22,180 --> 01:20:26,310 I'm sedating him as much as I dare. I don't know what else to do. 858 01:20:36,910 --> 01:20:41,040 How can he endure this for so many hours? 859 01:20:43,580 --> 01:20:45,620 Augusto... 860 01:20:46,580 --> 01:20:50,500 I don't think he'll have to endure it much longer. 861 01:21:22,910 --> 01:21:26,290 Michaela, let me take him. 862 01:21:26,420 --> 01:21:28,790 - You need rest. - I'm fine. 863 01:21:29,590 --> 01:21:32,050 I could use a cup of coffee, though. 864 01:21:41,220 --> 01:21:43,770 Lorenzo... Lorenzo, listen to Mama. 865 01:21:44,730 --> 01:21:46,850 Can you hear me, my darling? 866 01:21:46,980 --> 01:21:49,690 If this is too much for you, my sweetheart... 867 01:21:49,810 --> 01:21:54,490 ...well then you fly, you fly as fast as you can to baby Jesus. 868 01:21:57,360 --> 01:21:59,370 It's OK. 869 01:22:01,370 --> 01:22:03,620 Mama and Papa will be OK. 870 01:22:42,910 --> 01:22:46,620 I have rarely seen anything like this boy's tenacity. 871 01:22:51,500 --> 01:22:54,000 They have a bed available upstairs. 872 01:22:54,130 --> 01:22:56,590 No, no, no. In a hospice, no. 873 01:22:57,550 --> 01:22:59,470 It'd be easier. On everybody. 874 01:22:59,590 --> 01:23:02,430 But I would not do honour to Lorenzo. 875 01:23:21,240 --> 01:23:23,370 Michaela. Come. 876 01:23:23,490 --> 01:23:25,950 - What? - Come. Come on. 877 01:23:26,120 --> 01:23:28,160 - Nurse. - Yes. 878 01:23:38,050 --> 01:23:41,970 Now, today we eat, moglie mia, every last mouthful. 879 01:23:42,090 --> 01:23:44,260 - I'm not hungry. - No, no, no. You eat. 880 01:23:44,430 --> 01:23:45,470 Sit. 881 01:23:45,600 --> 01:23:48,720 Michaela, you sit. Sit. 882 01:23:48,850 --> 01:23:53,270 From tomorrow morning, the Odones need all their energies. 883 01:23:53,400 --> 01:23:57,940 Now listen. We set out to normalise Lorenzo's blood, right? 884 01:23:58,070 --> 01:24:04,070 And with the oleic oil, we got it half-right, but that was luck. 885 01:24:04,200 --> 01:24:09,160 - It was rather more than luck. - No, it was luck. Merely observation. 886 01:24:09,290 --> 01:24:12,290 Rizzo observed something in a test tube, right? 887 01:24:12,410 --> 01:24:14,580 We tried it on Lorenzo. 888 01:24:14,710 --> 01:24:18,130 Rizzo observed a 50 per cent drop in fibroblasts. 889 01:24:18,250 --> 01:24:21,340 We observed a 50 per cent drop in Lorenzo. 890 01:24:22,760 --> 01:24:26,970 Michaela, that is luck. That is observation. 891 01:24:27,100 --> 01:24:31,430 That is all it is. It is not understanding. 892 01:24:31,560 --> 01:24:35,020 And until we understand why this work only halfway... 893 01:24:35,150 --> 01:24:39,070 ...how can we expect to succeed all the way? 894 01:24:39,230 --> 01:24:43,780 I need to understand, Michaela. You need to understand. 895 01:24:44,820 --> 01:24:47,950 So, tomorrow we go back to the library. 896 01:24:48,700 --> 01:24:53,750 No, no, no. We review all the literature, everything on fatty-acid metabolism... 897 01:24:53,870 --> 01:24:56,420 ...every word published in the last decade. 898 01:24:56,540 --> 01:24:58,880 So, eat. You eat. 899 01:24:59,000 --> 01:25:02,340 Whatever energy or time I have left I want to spend with Lorenzo. 900 01:25:02,460 --> 01:25:05,180 You will not have to leave him. I will go to the library. 901 01:25:05,300 --> 01:25:07,680 I make copies for you, I bring it home for you. 902 01:25:07,800 --> 01:25:11,560 Augusto, we are on our second mortgage. You can't afford not to go to work. 903 01:25:11,680 --> 01:25:15,190 Michaela, I will work. I'll fit it in somehow. 904 01:25:16,480 --> 01:25:20,400 Michaela, this is important. I need you. 905 01:25:23,030 --> 01:25:25,030 I need you, Michaela. 906 01:25:26,780 --> 01:25:28,530 So eat. 907 01:25:47,680 --> 01:25:51,060 Brava! Bravissima! Bravissima! 908 01:26:13,160 --> 01:26:15,200 Betty! Betty! 909 01:26:16,160 --> 01:26:20,420 All these fatty-acid studies concentrate on the middle of the chain... 910 01:26:20,540 --> 01:26:24,380 ...because the medium-chain saturates are implicated in cholesterol. 911 01:26:24,510 --> 01:26:28,010 So what do these researchers do? Think cholesterol, cholesterol. 912 01:26:28,180 --> 01:26:31,260 C12. C14, C-bloody-16! 913 01:26:31,430 --> 01:26:34,770 - Augusto, what are you looking for? - I am looking... 914 01:26:34,890 --> 01:26:39,230 - ...for the long end of fatty-acid chains! - All right. Write it down for me. 915 01:26:39,350 --> 01:26:42,480 These researchers should be doing something about this. 916 01:26:42,650 --> 01:26:44,980 - Write it down. - Long-chain fatty acids. 917 01:26:45,110 --> 01:26:48,860 C18 through C26. 918 01:26:49,530 --> 01:26:51,320 Saturated. 919 01:26:51,450 --> 01:26:53,870 Monounsaturated, OK? 920 01:26:53,990 --> 01:26:57,120 OK. Now I want you to go off to lunch. 921 01:26:57,250 --> 01:27:01,380 Have yourself a good lunch and I'm gonna see what I can do. 922 01:27:11,970 --> 01:27:14,260 This is the best I could do at short notice. 923 01:27:14,390 --> 01:27:17,980 One article from a veterinary science journal about pigs. 924 01:27:18,100 --> 01:27:22,350 - But it's on your long-chain fats. - Well, thank you, Betty. 925 01:27:22,480 --> 01:27:25,480 Listen, I am very sorry about... 926 01:27:25,610 --> 01:27:28,490 Oh, well, you're Italian. 927 01:27:32,490 --> 01:27:37,040 ...72, 73, 74... 928 01:27:37,160 --> 01:27:41,370 That's it. 75, 76... 929 01:27:42,250 --> 01:27:45,590 ...77, 78... 930 01:27:46,170 --> 01:27:48,420 Nice going, Mrs Odone. 931 01:27:49,510 --> 01:27:53,550 That's it, my love. You know only the strongest, bravest boy... 932 01:27:53,680 --> 01:27:57,430 ...only a very special person like you is chosen to fight the boo-boo. 933 01:27:57,560 --> 01:28:00,140 I'll give him a little water, OK? 20cc's? 934 01:28:00,270 --> 01:28:01,350 Yes. 935 01:28:01,480 --> 01:28:06,610 And, Nancy Jo, why don't you tell Lorenzo what an excellent job he did? 936 01:28:06,730 --> 01:28:09,070 An excellent job you did, Lorenzo. 937 01:28:09,240 --> 01:28:14,620 Sometimes I wonder, my love, if people realise how incredible you truly are. 938 01:28:24,290 --> 01:28:26,840 Oh, thank you. Thank you very much. 939 01:28:28,340 --> 01:28:30,710 Is this a new hobby or a nervous tic? 940 01:28:33,430 --> 01:28:36,800 No, this is a simple mind at work, that's all. 941 01:28:36,930 --> 01:28:41,310 See, each paperclip, Deirdre, is two carbon atom, right? 942 01:28:41,430 --> 01:28:43,140 - Oh, God! - No, no, no. 943 01:28:43,270 --> 01:28:45,600 Really is two carbon atom, all right? 944 01:28:45,770 --> 01:28:49,530 So we have C2, C4, C6, you know? 945 01:28:49,690 --> 01:28:52,700 Now, here's what I try to do. I try to make a chain... 946 01:28:52,900 --> 01:28:56,780 ...a very long chain of monounsaturated fats. 947 01:28:56,910 --> 01:29:00,540 - This is the good guys, right? - OK, what are these? The bad guys? 948 01:29:00,660 --> 01:29:03,210 Yes. These here... 949 01:29:03,330 --> 01:29:05,960 ...is the bad guys, all right? 950 01:29:06,080 --> 01:29:08,210 Now, Deirdre, what I'm trying to do... 951 01:29:08,340 --> 01:29:10,750 I try to understand the relationship... 952 01:29:10,880 --> 01:29:13,970 ...between the good guys and the bad guys. 953 01:29:14,340 --> 01:29:17,260 So, OK, I am the enzyme, right? 954 01:29:17,390 --> 01:29:22,810 And I reach out and grab a carbon atom and I put it on my chain, right? 955 01:29:22,930 --> 01:29:24,390 Here is my chain. 956 01:29:24,560 --> 01:29:27,310 Now, here, you be the bad-guy enzyme, OK? 957 01:29:27,440 --> 01:29:31,190 No, no. Do this for me. You be bad-guy enzyme, all right? 958 01:29:31,320 --> 01:29:32,820 Take this, all right? 959 01:29:32,940 --> 01:29:38,160 Now you reach out and grab a carbon atom and put it on your bad-guy chain. 960 01:29:38,280 --> 01:29:40,700 I had enough trouble with the kitchen sink. 961 01:29:40,870 --> 01:29:45,660 No, no. You just do this and then I explain, OK? All right. 962 01:29:45,790 --> 01:29:51,500 So let's each start now making our chains. 963 01:29:51,630 --> 01:29:56,180 OK? All right? Do another one. That's good, Deirdre. 964 01:29:56,300 --> 01:29:58,430 Good. We put another one on... 965 01:29:58,550 --> 01:30:02,390 - Here's the stuff on enzyme complexes. - Ah, thank you. Mille grazie. 966 01:30:02,520 --> 01:30:04,430 - Prego. - Prego! Very good. 967 01:30:04,560 --> 01:30:07,020 - Now, did you make the extra copies? - Oh, you bet. 968 01:30:07,140 --> 01:30:09,610 - Thank you very much. - For Michaela? How is she? 969 01:30:09,730 --> 01:30:11,190 She's fine. 970 01:30:11,270 --> 01:30:15,950 So here we are. We're making our chains more or less the same rate, right? 971 01:30:16,070 --> 01:30:18,280 That's as one would expect, right? 972 01:30:18,410 --> 01:30:21,700 But, now, Deirdre, if we were enzymes... 973 01:30:21,830 --> 01:30:25,410 ...in the bodies of little rats and little pigs and Lorenzo... 974 01:30:25,540 --> 01:30:29,460 ...then the faster I go, the more you slow down. 975 01:30:30,330 --> 01:30:32,710 Now, why would that be? 976 01:30:32,840 --> 01:30:38,590 Why, the faster I go, would you slow down, if we are both separate enzymes? 977 01:30:38,760 --> 01:30:43,640 It means that there has to be some kind of relationship going on. 978 01:30:43,760 --> 01:30:48,190 We affect each other some way. There's some kind of interplay. 979 01:30:48,310 --> 01:30:50,900 But what is it? 980 01:30:51,060 --> 01:30:53,110 What is it? 981 01:30:56,610 --> 01:30:58,650 One, two... 982 01:30:59,410 --> 01:31:01,820 ...three, four... 983 01:31:02,700 --> 01:31:05,410 ...five, six... 984 01:31:05,950 --> 01:31:07,620 ...seven candles. 985 01:31:07,750 --> 01:31:10,580 And Mommy will blow them out for you. 986 01:31:10,710 --> 01:31:12,750 Make a wish. 987 01:31:53,250 --> 01:31:56,090 Michaela! They are the same enzyme! 988 01:31:56,210 --> 01:32:01,340 There is one enzyme for both chains. It's the same bloody enzyme! 989 01:32:01,470 --> 01:32:05,050 So if we keep the enzyme busy making monounsaturates... 990 01:32:05,180 --> 01:32:07,770 It distracts it from elongating the saturates. 991 01:32:07,890 --> 01:32:10,560 Right! So we have a way to trick nature. 992 01:32:10,680 --> 01:32:13,810 Yes, it's a principle called "competitive inhibition". 993 01:32:13,940 --> 01:32:17,190 So, Gus, do you think it's a reasonable hypothesis? 994 01:32:17,320 --> 01:32:21,740 I think it's more. You've clarified the biochemical pathway. 995 01:32:21,860 --> 01:32:24,620 Augusto, I really want to congratulate you. 996 01:32:24,780 --> 01:32:29,200 This would explain why oleic acid is only partly successful. 997 01:32:29,330 --> 01:32:33,170 Yes, it's C18, you see. It's too low down in the chain. 998 01:32:33,290 --> 01:32:37,710 So we add a second barrier. We block the bad guys further up the chain... 999 01:32:37,840 --> 01:32:42,130 ...the saturates further up the chain, between C22 and C24. 1000 01:32:42,260 --> 01:32:44,510 There we stop the bloody things completely. 1001 01:32:44,640 --> 01:32:48,430 - And how would you do that? - By adding monounsaturated C22. 1002 01:32:48,560 --> 01:32:51,350 - That's erucic acid. - Yes, exactly. 1003 01:32:52,020 --> 01:32:54,060 Erm... 1004 01:32:54,190 --> 01:32:56,020 - Martha? - Yes, Doctor? 1005 01:32:56,190 --> 01:33:01,440 Among our animal studies, you will find a file on erucic acid. 1006 01:33:01,570 --> 01:33:04,360 With an e... r-u-c-i-c. 1007 01:33:04,530 --> 01:33:06,570 - OK. - Thank you. 1008 01:33:07,490 --> 01:33:10,080 You don't believe it will work? 1009 01:33:10,200 --> 01:33:15,540 I think what you have done is postulate a theory that could be of enormous benefit. 1010 01:33:15,710 --> 01:33:20,300 But, as for erucic acid, it creates cardiac problems in rats. 1011 01:33:21,090 --> 01:33:24,930 If it's not safe for rats, I don't know what justification there can be... 1012 01:33:25,050 --> 01:33:29,050 ...for using it as a therapy on humans. 1013 01:33:29,180 --> 01:33:31,020 But Gus, Gus... 1014 01:33:31,140 --> 01:33:35,100 ...erucic acid is the chief component in rapeseed oil, right? 1015 01:33:35,230 --> 01:33:38,770 Rapeseed oil is a common food in China and India. 1016 01:33:38,900 --> 01:33:41,900 And their rate of heart disease is far lower than here. 1017 01:33:42,030 --> 01:33:45,820 All right, look at these documents. Cardiac lipidosis... 1018 01:33:45,950 --> 01:33:50,240 ...myocardial lesions, cholesterol deposits in the adrenal gland... 1019 01:33:50,370 --> 01:33:53,370 ...and damage to the reproductive system. 1020 01:33:53,500 --> 01:33:57,210 I'm afraid the weight of evidence is much too great. 1021 01:33:57,330 --> 01:33:59,960 And no human-studies review committee... 1022 01:34:00,090 --> 01:34:04,300 ...will ever do anything but discard erucic acid out of hand. 1023 01:34:04,510 --> 01:34:08,890 But the human studies have been accomplished by history. 1024 01:34:09,010 --> 01:34:13,470 They have been eating the stuff in these countries for thousands of years. 1025 01:34:13,680 --> 01:34:17,560 You can't expect me to start a protocol based on that kind of assertion. 1026 01:34:17,690 --> 01:34:19,940 You should examine your protocol... 1027 01:34:20,060 --> 01:34:23,730 ...when children are dying and find a way to research these... 1028 01:34:23,900 --> 01:34:27,820 - It's common sense. - We simply have a contradiction. 1029 01:34:27,990 --> 01:34:31,910 We seek more information. We do not dismiss erucic acid out of hand. 1030 01:34:32,080 --> 01:34:36,540 Michaela, if I ignore all this evidence... 1031 01:34:36,660 --> 01:34:40,500 ...and we embark on a therapy based on erucic acid... 1032 01:34:42,250 --> 01:34:45,260 Something goes wrong. What then? 1033 01:34:45,840 --> 01:34:50,390 Well, then I suppose the risk-reward ratio is too unattractive for you. 1034 01:34:51,050 --> 01:34:53,100 I beg your pardon? 1035 01:34:54,270 --> 01:34:57,770 The life of one boy is not enough reward for you... 1036 01:34:57,890 --> 01:35:03,150 ...to risk the reputation of the institution and the esteem of your peers. 1037 01:35:04,820 --> 01:35:10,450 That was uncalled for. Your responsibility is merely towards your own child. 1038 01:35:10,570 --> 01:35:15,620 My responsibility is towards all the boys that suffer from this disease... 1039 01:35:15,740 --> 01:35:17,910 ...now and in the future. 1040 01:35:18,960 --> 01:35:22,540 Of course I anguish for the suffering of your boy. 1041 01:35:23,380 --> 01:35:28,010 And of course I applaud you for the efforts you make on his behalf. 1042 01:35:28,880 --> 01:35:31,970 But I will have nothing to do with this oil. 1043 01:35:33,180 --> 01:35:38,310 We are not asking, Doctor, for your anguish or your applause. 1044 01:35:38,430 --> 01:35:41,520 We are asking merely for a little courage. 1045 01:35:46,690 --> 01:35:48,740 OK. All right. 1046 01:35:53,660 --> 01:35:59,330 No, whatever the doctors say, reason tells us it is a risk worth taking. 1047 01:35:59,500 --> 01:36:03,750 But, my friend, we need a sympathetic collaborator, hm? 1048 01:36:03,880 --> 01:36:07,380 If it was in my hands, I would do anything I could to help, Mr Odone. 1049 01:36:07,510 --> 01:36:09,550 I have a boy of my own. 1050 01:36:10,420 --> 01:36:12,430 But I don't like our chances. 1051 01:36:12,550 --> 01:36:17,470 You know, they said the same thing about the oleic acid, and here it was... 1052 01:36:17,600 --> 01:36:21,350 - ...sitting right on the shelf. - This is a whole other ball game. 1053 01:36:21,480 --> 01:36:25,610 Extracting the saturated C24 and 26 from rapeseed oil... 1054 01:36:25,730 --> 01:36:28,980 It's very tricky. It would take our best chemist at least a year. 1055 01:36:29,110 --> 01:36:34,780 And then you would never get it past the FDA. Erucic acid for human consumption? 1056 01:36:34,910 --> 01:36:39,120 I'm sorry, but no one in the country is gonna touch it. 1057 01:36:39,250 --> 01:36:42,620 Well, what about outside this country, hm? 1058 01:36:42,750 --> 01:36:44,880 Uh, I wouldn't know where to send you. 1059 01:36:45,000 --> 01:36:49,920 Oh, Mr Pellerman! We're agents for over a dozen foreign companies. 1060 01:36:50,050 --> 01:36:52,010 There must be one that could help. 1061 01:36:52,130 --> 01:36:55,390 Maybe all we need to do is look at the list of the foreign companies. 1062 01:36:55,510 --> 01:36:58,560 No, you and your wife have enough to do. 1063 01:36:58,720 --> 01:37:03,440 I'm sure Mr Pellerman would be happy to make the calls for you. 1064 01:37:07,570 --> 01:37:09,360 We'd have to be covered, legally. 1065 01:37:09,480 --> 01:37:13,860 If anything goes wrong, this company is not going to be held liable. 1066 01:37:14,030 --> 01:37:17,240 Oh, we would not hold you liable. No, no. 1067 01:37:17,370 --> 01:37:23,370 And this... It would be greatly appreciated if we could circulate this. 1068 01:37:28,040 --> 01:37:33,010 "The interplay of monounsaturated and saturated fatty acids: 1069 01:37:33,130 --> 01:37:36,300 ...therapeutic application in ALD." 1070 01:37:36,430 --> 01:37:37,970 - Wow. - You wrote this? 1071 01:37:38,100 --> 01:37:41,770 Yes. We felt that if we were asking for help... 1072 01:37:41,890 --> 01:37:45,230 ...our rationale needs to be very clear. 1073 01:37:45,350 --> 01:37:50,980 We've all read your paper. It's a beautiful piece of biochemistry. 1074 01:37:51,110 --> 01:37:54,360 Over a hundred companies all say "too difficult". 1075 01:37:54,490 --> 01:37:58,070 Well, my first impression was that it's bloody impossible. 1076 01:37:58,200 --> 01:38:02,040 But I've been doing difficult fractionations for 40 years... 1077 01:38:02,160 --> 01:38:05,920 - ...and I'd like to have a stab at it. - How long do you think, Mr Suddaby? 1078 01:38:06,040 --> 01:38:09,920 I've only six months before I retire, so we'll see. 1079 01:38:10,040 --> 01:38:15,220 All right. Then I'll let you get on with it. Call me if you have any questions. 1080 01:38:15,340 --> 01:38:17,380 Righto. Bye, then. 1081 01:38:39,740 --> 01:38:41,780 Who could this be? 1082 01:38:45,540 --> 01:38:47,870 Ah, your good friend Wendy... 1083 01:38:48,000 --> 01:38:51,840 ...with all sorts of lovely vegetables and fruits. 1084 01:38:52,550 --> 01:38:54,550 - Hi, Michaela. - Look what you brought us! 1085 01:38:54,710 --> 01:38:56,590 Hi, Lorenzo. 1086 01:38:56,760 --> 01:38:58,720 Jake's not in school today? 1087 01:38:58,880 --> 01:39:00,930 He's not feeling so good. 1088 01:39:03,350 --> 01:39:07,730 I'm going for a walk with Mrs Gimble and we shall be back shortly. 1089 01:39:07,890 --> 01:39:11,310 I've given him his oxcarbazepine and 15ml of water. 1090 01:39:12,190 --> 01:39:16,190 - Do you want me to do anything else? - I'm sure he would love a story. 1091 01:39:16,320 --> 01:39:18,780 Do you have a problem with this? 1092 01:39:21,200 --> 01:39:23,160 Fine. 1093 01:39:29,580 --> 01:39:33,340 - He's had a couple of tantrums. - Oh, I'm sorry. 1094 01:39:33,500 --> 01:39:35,550 It's OK. 1095 01:39:36,420 --> 01:39:40,550 - Dr Rizzo got him in the oleic acid trial. - That's good. 1096 01:39:45,930 --> 01:39:47,980 Hi, Jake. 1097 01:39:49,480 --> 01:39:52,650 Hi, sweetie. Thank you for my potatoes. 1098 01:39:55,020 --> 01:39:57,070 Say hello, son. 1099 01:39:59,820 --> 01:40:02,320 Hi, Mrs... 1100 01:40:02,450 --> 01:40:05,530 ...Odone. 1101 01:40:14,960 --> 01:40:18,050 He saw the way Jaybird went. 1102 01:40:18,920 --> 01:40:21,380 He knows what's in store for him. 1103 01:40:27,520 --> 01:40:30,350 "They forgot their hunger and followed the bird." 1104 01:40:30,480 --> 01:40:32,520 "They came to an opening in the forest." 1105 01:40:32,650 --> 01:40:37,020 "Before them was a little cottage, gleaming in the rays of the setting sun." 1106 01:40:37,150 --> 01:40:41,110 "'Look, Gretel' exclaimed Hansel. 'That cottage is made of gingerbread."' 1107 01:40:41,240 --> 01:40:44,570 "'It really is' replied Gretel, running up and tasting a bit... 1108 01:40:44,740 --> 01:40:46,660 ...that she had pulled from the wall." 1109 01:40:46,830 --> 01:40:49,370 "'And the roof is shingled with butterscotch."' 1110 01:40:49,500 --> 01:40:53,580 "'The windowsills are made of chocolate' declared Hansel, breaking off a bit." 1111 01:40:53,710 --> 01:40:57,340 "'The windowpanes are clear candy' said Gretel. At that moment..." 1112 01:40:57,460 --> 01:41:01,090 Nancy Jo, do you think you could muster just a tad more enthusiasm? 1113 01:41:01,220 --> 01:41:04,180 Lorenzo loves words. He loves the sound of language. 1114 01:41:04,300 --> 01:41:07,720 Well, I'm paid to nurse, not read stories. 1115 01:41:08,600 --> 01:41:12,060 You've decided his mind doesn't need as much nurturing as his body? 1116 01:41:12,230 --> 01:41:14,270 What mind? 1117 01:41:14,850 --> 01:41:16,900 I beg your pardon! 1118 01:41:18,150 --> 01:41:20,530 Nothing. 1119 01:41:20,650 --> 01:41:22,740 Get out. 1120 01:41:22,860 --> 01:41:25,450 - Look, Mrs Odone... - Just get out. 1121 01:41:25,570 --> 01:41:28,990 I've read up on this disease! I know what it's done to his brain! 1122 01:41:29,120 --> 01:41:32,870 Sh! Lorenzo doesn't need this from a subliterate with a double-digit IQ! 1123 01:41:33,000 --> 01:41:35,460 Face it. The lights are out and nobody's home! 1124 01:41:35,620 --> 01:41:38,130 - Just get out. Go! - Well, merry Christmas. 1125 01:41:38,250 --> 01:41:40,460 - Get out! - Happy holidays! 1126 01:41:41,340 --> 01:41:43,380 And a joyous yuletide! 1127 01:41:51,310 --> 01:41:53,770 "Near a great forest lived a poor woodcutter... 1128 01:41:53,890 --> 01:41:57,100 ...with his two children, Hansel and Gretel." 1129 01:41:57,230 --> 01:42:00,690 "Times were very hard and a day came when there was no food... 1130 01:42:00,820 --> 01:42:02,940 ...except a little stale bread." 1131 01:42:03,030 --> 01:42:06,570 "But Hansel..." was like you, my darling. 1132 01:42:07,870 --> 01:42:13,660 "He was a clever lad who knew how to solve difficult problems." 1133 01:42:15,410 --> 01:42:18,080 "The woodcutter was very sad..." 1134 01:42:19,040 --> 01:42:21,670 Are you going to keep doing this? 1135 01:42:21,800 --> 01:42:26,010 She brought it on herself. She consigned herself to the outer darkness. 1136 01:42:26,130 --> 01:42:30,720 Michaela, Nancy Jo, she was a good nurse. You train her well. 1137 01:42:30,850 --> 01:42:33,850 Yes, but I want someone to give him more than medication. 1138 01:42:33,970 --> 01:42:37,560 Someone who will minister to his mind and his soul. 1139 01:42:38,520 --> 01:42:40,770 - I think I've found him. - What? 1140 01:42:42,070 --> 01:42:45,280 I wrote to Omouri. I asked him to come and stay with us. 1141 01:42:45,400 --> 01:42:46,400 - Omouri? - Yes. 1142 01:42:46,530 --> 01:42:50,660 Lorenzo is surrounded by women all day. I don't want him to grow up hag-ridden. 1143 01:42:50,780 --> 01:42:53,870 But you cannot take a boy out of his fishing village... 1144 01:42:54,040 --> 01:42:56,120 ...and bring him here to nurse Lorenzo. 1145 01:42:56,250 --> 01:42:59,920 Not to nurse him, to be his friend. To bring the Comoros into this room. 1146 01:43:00,130 --> 01:43:06,340 We cannot uproot this young man from his family, his way of life. 1147 01:43:07,420 --> 01:43:10,470 - Where will he live? - Here, in Lorenzo's room. 1148 01:43:10,590 --> 01:43:13,680 But... he has no English. 1149 01:43:14,560 --> 01:43:17,600 He's a Muslim. An African. 1150 01:43:17,730 --> 01:43:23,190 We cannot bring an African to this racist country to be a second-class citizen. 1151 01:43:23,320 --> 01:43:26,280 - This is Washington, DC. - He'll be part of this family. 1152 01:43:26,400 --> 01:43:29,240 I'll teach him English. There's a lot we can do for him. 1153 01:43:29,360 --> 01:43:31,410 Oh, Michaela... 1154 01:43:31,990 --> 01:43:34,030 Here. Sit down, sit down. 1155 01:43:35,660 --> 01:43:40,370 Now, the last time Omouri saw Lorenzo... 1156 01:43:40,500 --> 01:43:42,540 ...he was climbing trees. 1157 01:43:42,670 --> 01:43:46,260 He was a wild and vibrant boy, full of life. 1158 01:43:49,840 --> 01:43:52,720 In the letter that you wrote to Omouri... 1159 01:43:53,890 --> 01:43:58,850 ...did you tell him what he will see when he walks into this room? 1160 01:44:00,310 --> 01:44:05,360 I told him he'd see a young man who was very ill and had need of a friend. 1161 01:44:06,150 --> 01:44:07,780 That is all? 1162 01:44:07,900 --> 01:44:11,570 How would you have me describe him? As a biochemical conundrum? 1163 01:44:11,700 --> 01:44:13,740 Non è vero. 1164 01:44:14,620 --> 01:44:17,700 You know he is not that for me. 1165 01:44:19,330 --> 01:44:23,040 Augusto, when you look at him, what do you see? 1166 01:44:25,670 --> 01:44:28,130 Tell me the truth. 1167 01:46:02,100 --> 01:46:05,350 - How do I tell the man to give up? - Say his health won't take it. 1168 01:46:05,520 --> 01:46:09,360 The hours he's working are daft. Our expectations were unrealistic. 1169 01:46:09,520 --> 01:46:14,030 Look, Don's a man who's been working all of his life in face creams and cosmetics. 1170 01:46:14,150 --> 01:46:17,700 With this oil, he's having the time of his life. You tell him. I won't. 1171 01:46:17,820 --> 01:46:20,200 All right. For his own sake, I'll have to. 1172 01:46:20,330 --> 01:46:24,960 Then you can call Mrs Odone and tell her that you've pulled the plug. 1173 01:46:27,670 --> 01:46:30,960 - I'd best leave him be. - I think you're right. 1174 01:46:42,890 --> 01:46:44,930 Omouri! 1175 01:47:31,440 --> 01:47:34,730 Lorenzo... Omouri is here. 1176 01:48:41,470 --> 01:48:44,760 - Morning. - Good morning, Mr Suddaby. 1177 01:48:44,890 --> 01:48:49,020 There's a bottle of pure erucic acid triglyceride on my bench. 1178 01:48:49,140 --> 01:48:53,190 Will you see that it gets to young Mr Odone as soon as possible, please? 1179 01:48:53,850 --> 01:48:55,900 I'm off home now. Bye-bye. 1180 01:48:56,860 --> 01:48:58,570 Goodbye, Mr Suddaby. 1181 01:49:02,450 --> 01:49:05,160 Well, we'd better get on with it. 1182 01:49:13,830 --> 01:49:17,340 Four parts our old friend, the oleic. 1183 01:49:18,800 --> 01:49:20,800 And... 1184 01:49:21,420 --> 01:49:24,590 ...one part erucic. 1185 01:49:26,350 --> 01:49:30,020 And the journey begins, and like all good journeys... 1186 01:49:30,180 --> 01:49:32,850 ...with food. 1187 01:49:35,400 --> 01:49:37,650 Where's the wretched nurse? 1188 01:49:37,770 --> 01:49:41,650 I'm gonna take my baseline myself if she doesn't get here soon. 1189 01:49:41,780 --> 01:49:45,570 A month is much too long. If we check my blood every week... 1190 01:49:45,700 --> 01:49:51,160 ...and I have a cardiogram, we should know enough to start Lorenzo sooner. 1191 01:49:51,290 --> 01:49:53,540 Oh, at last! 1192 01:50:01,960 --> 01:50:03,760 Hi. 1193 01:50:03,880 --> 01:50:05,680 How's the mother tiger? 1194 01:50:07,260 --> 01:50:11,220 Augusto didn't tell you? I'm here to be Lorenzo's rat. 1195 01:50:13,480 --> 01:50:16,150 That's a very kind offer, but I can't let you. 1196 01:50:16,270 --> 01:50:20,230 I'm a carrier, just like you. My blood levels are just as high as yours. 1197 01:50:20,360 --> 01:50:24,280 I've had my baseline taken... and I'm starving. 1198 01:50:25,910 --> 01:50:29,660 Oh, I have been wanting to meet Lorenzo's main man. 1199 01:50:30,910 --> 01:50:33,290 I am content to greet Aunt Deirdre. 1200 01:50:33,410 --> 01:50:36,040 Well, it's good to meet you too. 1201 01:50:36,170 --> 01:50:40,840 Now, now, Michaela. I want no argument. Michaela, you cannot test it. 1202 01:50:40,960 --> 01:50:45,130 - Lorenzo needs you fit and well. - So you would put Deirdre at risk... 1203 01:50:45,260 --> 01:50:49,720 - ...without even discussing... - Hey! I backpacked all through India. 1204 01:50:49,850 --> 01:50:52,890 I must have eaten rapeseed oil up the wazoo. 1205 01:50:53,020 --> 01:50:56,520 - Ah, I've been fasting all day. - All right, go ahead. Try it. 1206 01:50:56,600 --> 01:50:58,690 OK, here goes. 1207 01:51:02,530 --> 01:51:04,900 So... does it taste awful? 1208 01:51:05,780 --> 01:51:07,950 - No? Good. - It's good. 1209 01:51:08,070 --> 01:51:10,490 Good. Eat, eat. 1210 01:51:15,160 --> 01:51:17,540 Your sister had no side effects? 1211 01:51:17,670 --> 01:51:22,130 None at all. If we can normalise the levels of a carrier so quickly, who knows? 1212 01:51:22,250 --> 01:51:25,300 - We'll start Lorenzo immediately. - Marvellous. 1213 01:51:25,420 --> 01:51:27,420 - We're all terribly grateful. - No, no. 1214 01:51:27,550 --> 01:51:32,300 Not to mention Deedee, the family rat. 1215 01:51:32,430 --> 01:51:36,230 - What dosage will you give the lad? - We don't have time to be conservative. 1216 01:51:36,390 --> 01:51:38,810 We've decided on eight grams. 1217 01:52:32,570 --> 01:52:35,330 ¶ I ride an old paint. 1218 01:52:35,490 --> 01:52:37,950 ¶ And lead on an old Dan. 1219 01:52:38,080 --> 01:52:40,710 ¶ I'm goin' to Montana. 1220 01:52:40,830 --> 01:52:43,630 ¶ To throw the Hoolihan. 1221 01:52:49,010 --> 01:52:50,720 - Hello. - Mr Odone? 1222 01:52:50,840 --> 01:52:52,260 Odo-ne, yes. 1223 01:52:52,380 --> 01:52:55,930 Look, we have a problem with this blood sample. 1224 01:52:56,060 --> 01:52:59,020 You have a problem? What is the problem? 1225 01:52:59,140 --> 01:53:02,650 Could there have been a mistake in the labelling? 1226 01:53:02,770 --> 01:53:05,520 No. No mistake. Why? 1227 01:53:05,650 --> 01:53:11,450 Well, we ran the assay twice and the levels of C24 and C26 read normal. 1228 01:53:17,660 --> 01:53:19,700 They read normal? 1229 01:53:20,700 --> 01:53:23,790 Well, uh, I... 1230 01:53:25,040 --> 01:53:27,210 Do you have the sample in front of you? 1231 01:53:27,380 --> 01:53:29,000 Yes. 1232 01:53:29,130 --> 01:53:33,090 - What is the name on the sample? - Lorenzo Michael Murphy Odone. 1233 01:53:33,220 --> 01:53:35,260 It's Odo-ne. 1234 01:53:36,010 --> 01:53:38,260 No, there's no mistake. 1235 01:53:39,270 --> 01:53:42,140 - But thank you very much. - OK, bye. 1236 01:53:52,360 --> 01:53:55,110 ¶ Whoopie-ti-yi-yo. 1237 01:53:55,240 --> 01:53:57,990 ¶ Get along, little dogies... 1238 01:54:07,750 --> 01:54:10,130 - What's going on? - His levels are normal. 1239 01:54:10,250 --> 01:54:12,920 - Play! Play! - Oh, that's wonderful! 1240 01:54:16,390 --> 01:54:19,010 Now, drink it up, son. 1241 01:54:19,140 --> 01:54:21,430 Every last drop. Good. 1242 01:54:23,060 --> 01:54:27,350 Mom says this is the only bottle in the world. 1243 01:54:29,110 --> 01:54:32,030 Now that we have destroyed Lorenzo's blood fats... 1244 01:54:32,150 --> 01:54:36,280 ...I'm sure that Mr Suddaby will make us plenty more, huh? 1245 01:54:37,160 --> 01:54:40,870 Mom says this is bootleg. 1246 01:54:42,500 --> 01:54:45,000 I know this is only a fraction of what it cost... 1247 01:54:45,120 --> 01:54:47,750 - No, no, no, Wendy. - You gotta take it. 1248 01:54:47,920 --> 01:54:51,210 No, we work on the barter system. 1249 01:54:51,340 --> 01:54:53,920 Our oil, your produce, huh? 1250 01:54:54,050 --> 01:54:57,430 There aren't that many potatoes in the world. 1251 01:54:57,550 --> 01:54:59,600 OK. Here you go. 1252 01:55:01,260 --> 01:55:03,020 So, when will you tell Nikolais? 1253 01:55:03,180 --> 01:55:06,980 Well, we told him and the other doctors and we sent all the figures. 1254 01:55:07,100 --> 01:55:11,400 - What did they have to say? - They deliberate. They want more study. 1255 01:55:11,520 --> 01:55:14,860 - Wendy, that's enough. - So the other kids have to wait? 1256 01:55:14,990 --> 01:55:17,200 We know what to do about that, don't we? 1257 01:55:17,280 --> 01:55:20,530 The doctors had a very hard time swallowing the first oil. 1258 01:55:20,660 --> 01:55:24,120 They want to see how it goes with Lorenzo on the second. 1259 01:55:24,250 --> 01:55:26,620 - But we don't have time, do we? - No. 1260 01:55:26,750 --> 01:55:30,040 So we leave science to its own concerns, huh? 1261 01:55:31,750 --> 01:55:34,210 - Merry Christmas. - Goodbye, Jake. 1262 01:56:09,120 --> 01:56:11,880 What happened to the suction machine? 1263 01:56:12,000 --> 01:56:15,960 There's no need, Michaela. Not for four hours. 1264 01:56:16,090 --> 01:56:18,010 I turned the machine off. 1265 01:56:20,800 --> 01:56:23,600 All last night he made to swallow for himself. 1266 01:56:24,680 --> 01:56:27,430 Augusto! Augusto! 1267 01:56:37,780 --> 01:56:40,530 We hope to make an announcement quite soon... 1268 01:56:40,650 --> 01:56:44,490 ...about a new development in our diet therapy. 1269 01:56:44,620 --> 01:56:47,750 It's expensive but, with the help of the government... 1270 01:56:47,870 --> 01:56:50,540 ...and of this wonderful foundation... 1271 01:56:50,660 --> 01:56:55,210 ...we are going to start a trial before the end of the year. 1272 01:57:04,300 --> 01:57:07,810 I can hear from that that you wish us Godspeed. 1273 01:57:19,150 --> 01:57:20,900 Excuse me, Doctor! 1274 01:57:21,030 --> 01:57:24,370 Are you referring to the oil the Odones have invented for Lorenzo? 1275 01:57:24,530 --> 01:57:27,540 - We'll take questions later. - No, it's a good question. 1276 01:57:27,700 --> 01:57:32,120 I should have mentioned it perhaps but... The Odones have been extremely active... 1277 01:57:32,250 --> 01:57:34,250 ...and we are in their debt. 1278 01:57:34,380 --> 01:57:37,040 Thanks to them, we are preparing a protocol... 1279 01:57:37,170 --> 01:57:40,380 ...for review by the human-studies committee. 1280 01:57:40,510 --> 01:57:43,760 If then we can persuade the government to fund us... 1281 01:57:43,880 --> 01:57:49,600 ...then we shall know if this oil is of more than temporary therapeutic value. 1282 01:57:49,720 --> 01:57:52,980 But it works! Lorenzo's blood levels are down to normal. 1283 01:57:53,100 --> 01:57:57,520 It's precisely for that reason that we are conducting this trial. 1284 01:57:57,650 --> 01:57:59,980 You don't expect me to endorse a therapy... 1285 01:58:00,110 --> 01:58:03,280 ...just on the basis of one hopeful observation? 1286 01:58:03,450 --> 01:58:06,700 There's two! My boy's been takin' the oil for six months. 1287 01:58:06,820 --> 01:58:10,080 Yes, Ellard, and his blood levels are down to normal. He's fine. 1288 01:58:10,200 --> 01:58:12,120 You are playing with people's hopes. 1289 01:58:12,250 --> 01:58:17,420 Where do these Odones get off, thinking they know more than the doctors? 1290 01:58:17,590 --> 01:58:21,010 - Where did you get this oil? - The Odones. They get it from England. 1291 01:58:21,130 --> 01:58:25,380 They don't have approval from the FDA. It's bootleg. Give the doctors a chance... 1292 01:58:25,510 --> 01:58:28,300 Come on, Ellard! It's a mixture of two cooking oils. 1293 01:58:28,430 --> 01:58:32,730 Two cooking oils? What's the dosage, please? What are the side effects of this? 1294 01:58:32,810 --> 01:58:35,900 - How would we pay for it? - There must be a formal protocol... 1295 01:58:36,020 --> 01:58:40,690 ...before we can raise funds. I understand it will cost over $1,000 a litre. 1296 01:58:40,820 --> 01:58:46,780 And no insurance company or government will support you without the approval. 1297 01:58:46,910 --> 01:58:49,990 And the only way to get it is through thorough testing. 1298 01:58:50,160 --> 01:58:53,750 That's what they told AIDS people about AZT, but they fought and got it. 1299 01:58:53,870 --> 01:58:57,540 Because they were dying. They didn't have time to wait... 1300 01:58:57,670 --> 01:59:00,960 We padded our walls yesterday! I want that oil! 1301 01:59:11,390 --> 01:59:15,100 There, my darling. That's a sweet boy. 1302 01:59:17,020 --> 01:59:19,060 What a big, strong boy. 1303 01:59:19,940 --> 01:59:22,400 Yes, my darling. Yes. 1304 01:59:55,220 --> 01:59:56,850 You see, Michaela... 1305 01:59:56,980 --> 02:00:01,360 ...it's as though he is trapped down in some dark cave. 1306 02:00:02,860 --> 02:00:08,150 Because he's lost so much myelin, he can't find his way out. 1307 02:00:08,280 --> 02:00:12,070 Now, we know his simple functions are intact. 1308 02:00:12,200 --> 02:00:15,950 He breathes, he swallows, his heart beats. 1309 02:00:16,660 --> 02:00:21,630 And from the outside world, he receives sensation. 1310 02:00:21,750 --> 02:00:23,840 A touch... 1311 02:00:25,460 --> 02:00:27,510 ...pain, cold. 1312 02:00:28,170 --> 02:00:31,510 And here are the primal feelings. 1313 02:00:31,640 --> 02:00:34,810 Fear, hunger, desire. 1314 02:00:36,390 --> 02:00:42,060 While up here in the neocortex, the higher brain, locked here... 1315 02:00:42,190 --> 02:00:46,480 ...are his reasoning, imagination, memory. 1316 02:00:47,650 --> 02:00:50,530 The things that make us each ourselves. 1317 02:00:55,700 --> 02:00:57,750 So how does he reach us? 1318 02:01:00,790 --> 02:01:04,080 When a simple swallow is such a huge task? 1319 02:01:07,670 --> 02:01:09,720 To find... 1320 02:01:10,340 --> 02:01:14,350 To find the way, the path from his mind... 1321 02:01:16,180 --> 02:01:18,220 ...to the outside world... 1322 02:01:20,310 --> 02:01:23,770 ...is like willing himself through a brick wall. 1323 02:01:26,110 --> 02:01:28,150 So he waits, huh? 1324 02:01:33,320 --> 02:01:35,370 He waits. 1325 02:01:37,660 --> 02:01:39,700 Michaela... 1326 02:01:45,080 --> 02:01:47,130 Do you ever think... 1327 02:01:49,920 --> 02:01:51,970 ...that... 1328 02:01:53,510 --> 02:01:56,600 ...maybe all this struggle... 1329 02:01:58,760 --> 02:02:02,430 ...it may have been for somebody else's kid? 1330 02:02:21,370 --> 02:02:23,410 Yes. 1331 02:02:53,940 --> 02:02:56,820 But I promised... I promised him... 1332 02:02:57,620 --> 02:03:00,030 ...his world would never be silent. 1333 02:03:01,990 --> 02:03:04,040 He would never be alone. 1334 02:03:05,580 --> 02:03:07,420 Yes. 1335 02:03:10,250 --> 02:03:13,090 "One morning, a little rabbit sat on a bank." 1336 02:03:13,210 --> 02:03:17,550 "He pricked his ears and listened to the trit-trot, trit-trot of a pony." 1337 02:03:17,680 --> 02:03:21,310 "A gig was coming along the road. It was driven by Mr McGregor." 1338 02:03:21,430 --> 02:03:24,930 "And beside him sat Mrs McGregor in her best bonnet." 1339 02:03:25,100 --> 02:03:28,810 "As soon as they had passed, little Benjamin Bunny slid down into the road... 1340 02:03:28,940 --> 02:03:33,030 ...and set off with a hop, skip and a jump to call upon his relations... 1341 02:03:33,150 --> 02:03:36,860 ...who lived in the woods at the back of Mr McGregor's garden." 1342 02:03:36,990 --> 02:03:41,620 "That wood was full of rabbit holes, and in the neatest, sandiest hole of all... 1343 02:03:41,740 --> 02:03:46,870 ...lived Benjamin's aunt and his cousins, Flopsy, Mopsy, Cottontail and Peter." 1344 02:03:47,000 --> 02:03:50,330 "Old Mrs Rabbit was a widow. She..." 1345 02:03:50,460 --> 02:03:54,050 "..earned her living by knitting rabbit-wool mittens and muffeties." 1346 02:03:54,170 --> 02:03:56,220 "I once bought a pair..." 1347 02:03:57,720 --> 02:04:00,800 What's the matter, darling? You don't like the story? 1348 02:04:08,440 --> 02:04:10,270 Lorenzo... 1349 02:04:12,270 --> 02:04:13,980 You don't like the story? 1350 02:04:16,820 --> 02:04:18,780 He does that a lot lately. 1351 02:04:18,900 --> 02:04:21,160 - When? - Mainly at story time. 1352 02:04:22,370 --> 02:04:24,410 Sweetheart... 1353 02:04:24,910 --> 02:04:26,950 Listen carefully to Mama. 1354 02:04:29,000 --> 02:04:31,750 Is your middle name Patrick? 1355 02:04:35,710 --> 02:04:38,920 No... Is it Peter? 1356 02:04:42,140 --> 02:04:44,260 No, Mommy. 1357 02:04:44,390 --> 02:04:47,220 Is it Michael? Michael Murphy? 1358 02:04:50,350 --> 02:04:52,020 Yes! Yes! 1359 02:04:52,150 --> 02:04:54,190 Only you don't know how to say that. 1360 02:04:54,320 --> 02:04:56,780 Will you teach Mommy how to say no? 1361 02:04:56,900 --> 02:05:00,200 When you close your eyes, does that mean no? 1362 02:05:00,320 --> 02:05:03,530 Oh, what an idiot! That was a yes question. 1363 02:05:03,660 --> 02:05:08,700 All right. You don't want to hear any more Benjamin Bunny, do you? 1364 02:05:11,460 --> 02:05:14,920 That's an emphatic reply! Very well, young man. 1365 02:05:16,050 --> 02:05:21,260 No more Benjamin Bunny. How could Mommy have been so thoughtless? 1366 02:05:21,380 --> 02:05:26,010 We're going to take all of these baby books to the children's hospital. 1367 02:05:26,180 --> 02:05:29,730 It's time for the big stuff. Something heroic. 1368 02:05:29,850 --> 02:05:32,850 There you go. You gotta tell us what you want. 1369 02:05:32,980 --> 02:05:36,150 The Once and Future King by TH White. 1370 02:05:38,900 --> 02:05:43,450 "The boy slept well in the woodland nest, where he had laid himself down." 1371 02:05:43,610 --> 02:05:46,700 "At first, he only dipped below the surface of sleep... 1372 02:05:46,830 --> 02:05:50,000 ...and skimmed along like a salmon in shallow water... 1373 02:05:50,120 --> 02:05:54,670 ...so close to the surface that he fancied himself in air." 1374 02:05:55,580 --> 02:05:59,000 "He thought himself awake, when he was already asleep." 1375 02:05:59,130 --> 02:06:00,840 "He saw the stars above his face... 1376 02:06:01,010 --> 02:06:04,050 ...whirling on their silent and sleepless axis... 1377 02:06:04,180 --> 02:06:07,720 ...and the leaves of the trees rustling against them." 1378 02:06:07,850 --> 02:06:11,020 "And he heard small changes in the grass." 1379 02:06:11,180 --> 02:06:15,690 "These little noises of footsteps and soft-fringed wing beats... 1380 02:06:15,810 --> 02:06:18,570 ...and stealthy bellies drawn over the grass blades." 1381 02:06:18,690 --> 02:06:24,240 "A rattling against the bracken at first frightened him, but interested him." 1382 02:06:29,830 --> 02:06:31,540 OK. Is it your thumb? 1383 02:06:34,330 --> 02:06:36,380 Is it your index finger? 1384 02:06:39,000 --> 02:06:41,050 Your middle finger? 1385 02:06:42,760 --> 02:06:45,090 Your little finger? 1386 02:06:45,220 --> 02:06:49,680 It's your little finger. You think you can move your little finger. 1387 02:06:49,810 --> 02:06:53,560 OK. Tell your brain to tell your arm... 1388 02:06:53,730 --> 02:06:57,230 ...to tell your hand to move your little finger. 1389 02:07:00,230 --> 02:07:03,320 Come on, sweetheart. Tell your brain to tell your arm... 1390 02:07:03,440 --> 02:07:06,860 ...to tell your hand to move your little finger. 1391 02:07:07,870 --> 02:07:10,530 Come on, my friend. What a wonderful thing. A "yes". 1392 02:07:10,660 --> 02:07:13,500 And then there'll be a "could be" and a "perhaps"... 1393 02:07:13,620 --> 02:07:17,120 ...and maybe even a "shut up, Mommy", but now we just have to get to "yes". 1394 02:07:17,290 --> 02:07:20,380 So tell your brain to tell your arm... 1395 02:07:20,500 --> 02:07:23,800 ...to tell your hand to move your little finger. 1396 02:07:27,050 --> 02:07:30,720 Come on, my love. Tell your brain to tell your hand... 1397 02:07:31,140 --> 02:07:33,180 ...to move your little finger. 1398 02:07:36,100 --> 02:07:39,360 - Come on, Lorenzo. - You can do it, my friend. 1399 02:07:39,480 --> 02:07:41,520 You can do it. 1400 02:07:42,900 --> 02:07:44,940 Come on, Lorenzo. 1401 02:08:05,340 --> 02:08:08,760 And they are born without myelin, correct? 1402 02:08:08,880 --> 02:08:13,010 The only naturally dismyelinated higher mammals in existence. 1403 02:08:13,140 --> 02:08:15,520 And this is passed from mother to son? 1404 02:08:15,640 --> 02:08:17,640 Yes. 1405 02:08:17,770 --> 02:08:21,060 Their mother is from Edinburgh. That's Jasmine. 1406 02:08:21,190 --> 02:08:23,650 She doesn't shake, but her male pups do. 1407 02:08:24,190 --> 02:08:28,700 - You think you can stop them shaking? - Well, we hope so. 1408 02:08:28,820 --> 02:08:33,280 By implanting nerve cells, we expect to see the growth of new myelin. 1409 02:08:33,410 --> 02:08:36,830 We've been partially remyelinating rats and mice for ten years... 1410 02:08:36,950 --> 02:08:39,210 ...and it's repeatable. 1411 02:08:40,210 --> 02:08:45,630 But if we could fund this work, it could be the first in higher animals. 1412 02:08:45,750 --> 02:08:48,670 And then in human beings, huh? 1413 02:08:48,800 --> 02:08:50,800 Well, in time, yes. 1414 02:08:51,510 --> 02:08:55,140 Dr Duncan, if I help you raise these funds... 1415 02:08:55,260 --> 02:08:58,600 ...and if we can get the researchers together to collaborate... 1416 02:08:58,730 --> 02:09:03,060 ...I think we can achieve very much in a very short time. 1417 02:09:03,230 --> 02:09:07,070 Augusto, we scientists are a very competitive lot. 1418 02:09:07,190 --> 02:09:12,700 Such a collaboration is a lovely idea, but sadly that is not how science works. 1419 02:09:12,820 --> 02:09:17,750 That's not necessarily so, because remember the Manhattan Project? 1420 02:09:17,870 --> 02:09:21,830 28 months. It took them 28 months. 1421 02:09:21,960 --> 02:09:26,300 Now, if scientists can come together to build the atomic bomb... 1422 02:09:26,420 --> 02:09:31,340 ...surely they come together to remyelinate some puppy dogs? 1423 02:09:42,940 --> 02:09:45,520 Papa called from Italy, darling. 1424 02:09:45,650 --> 02:09:49,490 He's missing his Lorenzacchio very, very much. 1425 02:09:49,610 --> 02:09:53,700 But he wants me to tell you he's making a big dinner tonight... 1426 02:09:53,820 --> 02:09:57,950 ...a banquet of brain food for the cleverest doctors in the world... 1427 02:09:58,080 --> 02:10:02,250 ...who've gathered together to put the myelin back in the shaking puppy dogs. 1428 02:10:02,370 --> 02:10:04,920 And if they can achieve that... 1429 02:10:05,080 --> 02:10:09,920 ...someday there might be a way to help all the people who've lost their myelin. 1430 02:10:10,050 --> 02:10:14,130 Not only the boys with ALD, but the people with multiple sclerosis... 1431 02:10:14,260 --> 02:10:16,930 ...and many other diseases, Lorenzo. 1432 02:10:17,760 --> 02:10:22,690 And then think, my brave boy, if they can ever give you back your myelin... 1433 02:10:22,810 --> 02:10:29,020 ...you'll be able to tell your brain to tell your toes, your fingers, your anything... 1434 02:10:29,150 --> 02:10:32,070 - ...to do what you want them to do. - ..what I want them to do. 1435 02:10:32,190 --> 02:10:34,530 And then, one day... 1436 02:10:35,320 --> 02:10:37,490 ...I'll hear my voice... 1437 02:10:37,620 --> 02:10:42,370 ...and all these words I'm thinking will get outside my head. 1438 02:11:56,070 --> 02:11:58,320 Oh! Now it broke! 1439 02:12:02,580 --> 02:12:05,250 This is Charles and this is Harry... 1440 02:12:05,370 --> 02:12:08,370 ...and they've both been on Lorenzo's Oil for two years. 1441 02:12:08,500 --> 02:12:11,920 My name is Michael Benton and I'm twelve and a half years old. 1442 02:12:12,040 --> 02:12:15,460 I've been taking Lorenzo's Oil for four and a half years. 1443 02:12:15,630 --> 02:12:21,470 I was diagnosed with ALD when I was 13 years old. I'm taking Lorenzo's Oil... 1444 02:12:21,640 --> 02:12:24,560 I've been taking Lorenzo's Oil for three years. 1445 02:12:24,680 --> 02:12:29,520 Some of the activities I'm involved in are baseball, basketball...