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ÈÊí ÈÊí
All these fatty-acid studies concentrate on the middle of the chain...
because the medium-chain saturates are implicated in cholesterol.
So what do these researchers do? Think cholesterol, cholesterol.
C12. C14, C-bloody-16!
Augusto, what are you looking for? -I am looking...
for the long end of fatty-acid chains! -All right. Write it down for me.
These researchers should be doing something about this.
Write it down. -Long-chain fatty acids.
C18 through C26.
Saturated.
Monounsaturated, OK?
OK. Now I want you to go off to lunch.
Have yourself a good lunch and I'm gonna see what I can do.
This is the best I could do at short notice.
One article from a veterinary science journal about pigs.
But it's on your long-chain fats. -Well, thank you, Betty.
Listen, I am very sorry about...
Oh, well, you're Italian.
72, 73, 74...
That's it. 75, 76,...
77, 78...
Nice going, Mrs Odone.
That's it, my love. You know only the strongest, bravest boy,...
only a very special person like you is chosen to fight the boo-boo.
I'll give him a little water, OK? 20cc's?
Yes.
And, Nancy Jo, why don't you tell Lorenzo what an excellent job he did?
An excellent job you did, Lorenzo.
Sometimes I wonder, my love, if people realise how incredible you truly are.
May 1985
Oh, thank you. Thank you very much.
Is this a new hobby or a nervous tic?
No, this is a simple mind at work, that's all.
See, each paperclip, Deirdre, is two carbon atom, right?
Oh, God! -No, no, no.
Really is two carbon atom, all right?
So we have C2, C4, C6, you know?
Now, here's what I try to do. I try to make a chain,...
a very long chain of monounsaturated fats.
This is the good guys, right? -OK, what are these? The bad guys?
Yes. These here...
is the bad guys, all right?
Now, Deirdre, what I'm trying to do...
I try to understand the relationship...
between the good guys and the bad guys.
So, OK, I am the enzyme, right?
And I reach out and grab a carbon atom and I put it on my chain, right?
Here is my chain.
Now, here, you be the bad-guy enzyme, OK?
No, no. Do this for me. You be bad-guy enzyme, all right?
Take this, all right?
Now you reach out and grab a carbon atom and put it on your bad-guy chain.
I had enough trouble with the kitchen sink.
No, no. You just do this and then I explain, OK? All right.
So let's each start now making our chains.
OK? All right? Do another one. That's good, Deirdre.
Good. We put another one on...
Here's the stuff on enzyme complexes. -Ah, thank you. Mille grazie.
Prego. -Prego! Very good.
Now, did you make the extra copies? -Oh, you bet.
Thank you very much. -For Michaela? How is she?
She's fine.
So here we are. We're making our chains more or less the same rate, right?
That's as one would expect, right?
But, now, Deirdre, if we were enzymes...
in the bodies of little rats and little pigs and Lorenzo,...
then the faster I go, the more you slow down.
Now, why would that be?
Why, the faster I go, would you slow down, if we are both separate enzymes?
It means that there has to be some kind of relationship going on.
We affect each other some way. There's some kind of interplay.
But what is it?
What is it?
May 29th 1985
One, two,...
three, four,...
five, six,...
seven candles.
And Mommy will blow them out for you.
Make a wish.
Michaela! They are the same enzyme!
There is one enzyme for both chains. It's the same bloody enzyme!
So if we keep the enzyme busy making monounsaturates...
It distracts it from elongating the saturates.
Right! So we have a way to trick nature.
Yes, it's a principle called "competitive inhibition".
So, Gus, do you think it's a reasonable hypothesis?
I think it's more. You've clarified the biochemical pathway.
Augusto, I really want to congratulate you.
This would explain why oleic acid is only partly successful.
Yes, it's C18, you see. It's too low down in the chain.
So we add a second barrier. We block the bad guys further up the chain,...
the saturates further up the chain, between C22 and C24.
There we stop the bloody things completely.
And how would you do that? -By adding monounsaturated C22.
That's erucic acid. -Yes, exactly.
Erm...
Martha? -Yes, Doctor?
Among our animal studies, you will find a file on erucic acid.
With an e... r-u-c-i-c.
OK. -Thank you.
You don't believe it will work?
I think what you have done is postulate a theory that could be of enormous benefit.
But, as for erucic acid, it creates cardiac problems in rats.
If it's not safe for rats, I don't know what justification there can be...
for using it as a therapy on humans.
But Gus, Gus,...
erucic acid is the chief component in rapeseed oil, right?
Rapeseed oil is a common food in China and India.
And their rate of heart disease is far lower than here.
All right, look at these documents. Cardiac lipidosis,...
myocardial lesions, cholesterol deposits in the adrenal gland...
and damage to the reproductive system.
I'm afraid the weight of evidence is much too great.
And no human-studies review committee...
will ever do anything but discard erucic acid out of hand.
But the human studies have been accomplished by history.
They have been eating the stuff in these countries for thousands of years.
You can't expect me to start a protocol based on that kind of assertion.
You should examine your protocol...
when children are dying and find a way to research these...
It's common sense. -We simply have a contradiction.
We seek more information. We do not dismiss erucic acid out of hand.
Michaela, if I ignore all this evidence...
and we embark on a therapy based on erucic acid...
Something goes wrong. What then?
Well, then I suppose the risk-reward ratio is too unattractive for you.
I beg your pardon?
The life of one boy is not enough reward for you...
to risk the reputation of the institution and the esteem of your peers.
That was uncalled for.
Your responsibility is merely towards your own child.
My responsibility is towards all the boys that suffer from this disease,...
now and in the future.
Of course I anguish for the suffering of your boy.
And of course I applaud you for the efforts you make on his behalf.
But I will have nothing to do with this oil.
We are not asking, Doctor, for your anguish or your applause.
We are asking merely for a little courage.
OK. All right.
No, whatever the doctors say, reason tells us it is a risk worth taking.
But, my friend, we need a sympathetic collaborator, hm?
If it was in my hands, I would do anything I could to help, Mr Odone.
I have a boy of my own.
But I don't like our chances.
You know, they said the same thing about the oleic acid, and here it was,...
sitting right on the shelf. -This is a whole other ball game.
Extracting the saturated C24 and 26 from rapeseed oil...
It's very tricky. It would take our best chemist at least a year.
And then you would never get it past the FDA. Erucic acid for human consumption?
I'm sorry, but no one in the country is gonna touch it.
Well, what about outside this country, hm?
Uh, I wouldn't know where to send you.
Oh, Mr Pellerman! We're agents for over a dozen foreign companies.
There must be one that could help.
Maybe all we need to do is look at the list of the foreign companies.
No, you and your wife have enough to do.
I'm sure Mr Pellerman would be happy to make the calls for you.
We'd have to be covered, legally.
If anything goes wrong, this company is not going to be held liable.
Oh, we would not hold you liable. No, no.
And this... It would be greatly appreciated if we could circulate this.
"The interplay of monounsaturated and saturated fatty acids:
therapeutic application in ALD."
Wow. -You wrote this?
Yes. We felt that if we were asking for help,...
our rationale needs to be very clear.
We've all read your paper. It's a beautiful piece of biochemistry.
Over a hundred companies all say "too difficult".
Well, my first impression was that it's bloody impossible.
But I've been doing difficult fractionations for 40 years...
and I'd like to have a stab at it. -How long do you think, Mr Suddaby?
I've only six months before I retire, so we'll see.
All right. Then I'll let you get on with it. Call me if you have any questions.
Righto. Bye, then.
CRODA CHEMICALS London
September 1985 Seventeen Months After Diagnosis
Who could this be?
Ah, your good friend Wendy...
with all sorts of lovely vegetables and fruits.
Hi, Michaela. -Look what you brought us!
Hi, Lorenzo.
Jake's not in school today?
He's not feeling so good.
I'm going for a walk with Mrs Gimble and we shall be back shortly.
I've given him his oxcarbazepine and 15ml of water.
Do you want me to do anything else? -I'm sure he would love a story.
Do you have a problem with this?
Fine.
He's had a couple of tantrums. -Oh, I'm sorry.
It's OK.
Dr Rizzo got him in the oleic acid trial. -That's good.
Hi, Jake.
Hi, sweetie. Thank you for my potatoes.
Say hello, son.
Hi, Mrs...
Odone.
He saw the way Jaybird went.
He knows what's in store for him.
"They forgot their hunger and followed the bird."
"They came to an opening in the forest."
"Before them was a little cottage, gleaming in the rays of the setting sun."
"'Look, Gretel' exclaimed Hansel. 'That cottage is made of gingerbread."'
"'It really is' replied Gretel, running up and tasting a bit...
that she had pulled from the wall."
"'And the roof is shingled with butterscotch."'
"'The windowsills are made of chocolate' declared Hansel, breaking off a bit."
"'The windowpanes are clear candy' said Gretel. At that moment"
Nancy Jo, do you think you could muster just a tad more enthusiasm?
Lorenzo loves words. He loves the sound of language.
Well, I'm paid to nurse, not read stories.
You've decided his mind doesn't need as much nurturing as his body?
What mind?
I beg your pardon!
Nothing.
Get out.
Look, Mrs Odone... -Just get out.
I've read up on this disease! I know what it's done to his brain!
Lorenzo doesn't need this from a subliterate with a double-digit IQ!
Face it. The lights are out and nobody's home!
Just get out. Go! -Well, merry Christmas.
Get out! -Happy holidays!
And a joyous yuletide!
"Near a great forest lived a poor woodcutter...
with his two children, Hansel and Gretel."
"Times were very hard and a day came when there was no food,...
except a little stale bread."
"But Hansel" was like you, my darling.
"He was a clever lad who knew how to solve difficult problems."
"The woodcutter was very sad"
Are you going to keep doing this?
She brought it on herself. She consigned herself to the outer darkness.
Michaela, Nancy Jo, she was a good nurse. You train her well.
Yes, but I want someone to give him more than medication.
Someone who will minister to his mind and his soul.
I think I've found him. -What?
I wrote to Omouri. I asked him to come and stay with us.
Omouri? -Yes.
Lorenzo is surrounded by women all day. I don't want him to grow up hag-ridden.
But you cannot take a boy out of his fishing village...
and bring him here to nurse Lorenzo.
Not to nurse him, to be his friend. To bring the Comoros into this room.
We cannot uproot this young man from his family, his way of life.
Where will he live? -Here, in Lorenzo's room.
But... he has no English.
He's a Muslim. An African.
We cannot bring an African to this racist country to be a second-class citizen.
This is Washington, DC. -He'll be part of this family.
I'll teach him English. There's a lot we can do for him.
Oh, Michaela...
Here. Sit down, sit down.
Now, the last time Omouri saw Lorenzo,...
he was climbing trees.
He was a wild and vibrant boy, full of life.
In the letter that you wrote to Omouri,...
did you tell him what he will see when he walks into this room?
I told him he'd see a young man who was very ill and had need of a friend.
That is all?
How would you have me describe him? As a biochemical conundrum?
Non è vero.
You know he is not that for me.
Augusto, when you look at him, what do you see?
Tell me the truth.
It's very difficult...
to know for sure...
what is left of our Lorenzo.
If a person cannot move,...
cannot see,...
cannot speak,...
how can we know what is in the soul?
He is my little boy.
And my only wish...
is to have him back as he was before.
March 1986 Twenty-three Months After Diagnosis
How do I tell the man to give up? -Say his health won't take it.
The hours he's working are daft. Our expectations were unrealistic.
Look, Don's a man who's been working all of his life in face creams and cosmetics.
With this oil, he's having the time of his life. You tell him. I won't.
All right. For his own sake, I'll have to.
Then you can call Mrs Odone and tell her that you've pulled the plug.
I'd best leave him be. -I think you're right.
Omouri!
Lorenzo... Omouri is here.
Morning. -Good morning, Mr Suddaby.
There's a bottle of pure erucic acid triglyceride on my bench.
Will you see that it gets to young Mr Odone as soon as possible, please?
I'm off home now. Bye-bye.
Goodbye, Mr Suddaby.
Well, we'd better get on with it.
September 1986
Four parts our old friend, the oleic.
And...
one part erucic.
And the journey begins, and like all good journeys,...
with food.
Where's the wretched nurse?
I'm gonna take my baseline myself if she doesn't get here soon.
A month is much too long. If we check my blood every week...
and I have a cardiogram, we should know enough to start Lorenzo sooner.
Oh, at last!
Hi.
How's the mother tiger?
Augusto didn't tell you? I'm here to be Lorenzo's rat.
That's a very kind offer, but I can't let you.
I'm a carrier, just like you. My blood levels are just as high as yours.
I've had my baseline taken... and I'm starving.
Oh, I have been wanting to meet Lorenzo's main man.
I am content to greet Aunt Deirdre.
Well, it's good to meet you too.
Now, now, Michaela. I want no argument. Michaela, you cannot test it.
Lorenzo needs you fit and well.p -So you would put Deirdre at risk...
without even discussing... -Hey! I backpacked all through India.
I must have eaten rapeseed oil up the wazoo.
Ah, I've been fasting all day. -All right, go ahead. Try it.
OK, here goes.
So... does it taste awful?
No? Good. -It's good.
Good. Eat, eat.
Your sister had no side effects?
None at all. If we can normalise the levels
of a carrier so quickly, who knows?
We'll start Lorenzo immediately. -Marvellous.
We're all terribly grateful. -No, no.
Not to mention Deedee, the family rat.
What dosage will you give the lad? -We don't have time to be conservative.
We've decided on eight grams.
September 27th 1986
Hello. -Mr Odone?
Odo-ne, yes.
Look, we have a problem with this blood sample.
You have a problem? What is the problem?
Could there have been a mistake in the labelling?
No. No mistake. Why?
Well, we ran the assay twice and the levels of C24 and C26 read normal.
They read normal?
Well, uh, I...
Do you have the sample in front of you?
Yes.
What is the name on the sample? -Lorenzo Michael Murphy Odone.
It's Odo-ne.
No, there's no mistake.
But thank you very much. -OK, bye.
December 8th 1986 Thirty-two Months After Diagnosis
What's going on? -His levels are normal.
Play! Play! -Oh, that's wonderful!
Now, drink it up, son.
Every last drop. Good.
Mom says this is the only bottle in the world.
Now that we have destroyed Lorenzo's blood fats,...
I'm sure that Mr Suddaby will make us plenty more, huh?
Mom says this is bootleg.
I know this is only a fraction of what it cost...
-No, no, no, Wendy. -You gotta take it.
No, we work on the barter system.
Our oil, your produce, huh?
There aren't that many potatoes in the world.
OK. Here you go.
So, when will you tell Nikolais?
Well, we told him and the other doctors and we sent all the figures.
What did they have to say? -They deliberate. They want more study.
Wendy, that's enough. -So the other kids have to wait?
We know what to do about that, don't we?
The doctors had a very hard time swallowing the first oil.
They want to see how it goes with Lorenzo on the second.
But we don't have time, do we? -No.
So we leave science to its own concerns, huh?
Merry Christmas. -Goodbye, Jake.
What happened to the suction machine?
There's no need, Michaela. Not for four hours.
I turned the machine off.
All last night he made to swallow for himself.
Augusto! Augusto!
February 1987
We hope to make an announcement quite soon...
about a new development in our diet therapy.
It's expensive but, with the help of the government...
and of this wonderful foundation,...
we are going to start a trial before the end of the year.
Six Months Later
I can hear from that that you wish us Godspeed.
Excuse me, Doctor!
Are you referring to the oil the Odones have invented for Lorenzo?
We'll take questions later. -No, it's a good question.
I should have mentioned it perhaps but... The Odones have been extremely active...
and we are in their debt.
Thanks to them, we are preparing a protocol...
for review by the human-studies committee.
If then we can persuade the government to fund us,...
then we shall know if this oil is of more than temporary therapeutic value.
But it works! Lorenzo's blood levels are down to normal.
It's precisely for that reason that we are conducting this trial.
You don't expect me to endorse a therapy...
just on the basis of one hopeful observation?
There's two! My boy's been takin' the oil for six months.
Yes, Ellard, and his blood levels are down to normal. He's fine.
You are playing with people's hopes.
Where do these Odones get off, thinking they know more than the doctors?
Where did you get this oil? -The Odones. They get it from England.
They don't have approval from the FDA.
It's bootleg. Give the doctors a chance...
Come on, Ellard! It's a mixture of two cooking oils.
Two cooking oils? What's the dosage, please?
What are the side effects of this?
How would we pay for it? -There must be a formal protocol...
before we can raise funds. I understand it will cost over $1,000 a litre.
And no insurance company or government will support you without the approval.
And the only way to get it is through thorough testing.
That's what they told AIDS people about AZT, but they fought and got it.
Because they were dying. They didn't have time to wait...
We padded our walls yesterday! I want that oil!
May 1988 Lorenzo's Tenth Birthday
There, my darling. That's a sweet boy.
What a big, strong boy.
Yes, my darling. Yes.
You see, Michaela,...
it's as though he is trapped down in some dark cave.
Because he's lost so much myelin, he can't find his way out.
Now, we know his simple functions are intact.
He breathes, he swallows, his heart beats.
And from the outside world, he receives sensation.
A touch,...
pain, cold.
And here are the primal feelings.
Fear, hunger, desire.
While up here in the neocortex, the higher brain, locked here,...
are his reasoning, imagination, memory.
The things that make us each ourselves.
So how does he reach us?
When a simple swallow is such a huge task?
To find...
To find the way, the path from his mind...
to the outside world...
is like willing himself through a brick wall.
So he waits, huh?
He waits.
Michaela...
Do you ever think...
that...
maybe all this struggle,...
it may have been for somebody else's kid?
Yes.
But I promised... I promised him...
his world would never be silent.
He would never be alone.
Yes.
Two Years Later
"One morning, a little rabbit sat on a bank."
"He pricked his ears and listened to the trit-trot, trit-trot of a pony."
"A gig was coming along the road. It was driven by Mr McGregor."
"And beside him sat Mrs McGregor in her best bonnet."
"As soon as they had passed, little Benjamin Bunny slid down into the road...
and set off with a hop, skip and a jump to call upon his relations,...
who lived in the woods at the back of Mr McGregor's garden."
"That wood was full of rabbit holes, and in the neatest, sandiest hole of all...
lived Benjamin's aunt and his cousins, Flopsy, Mopsy, Cottontail and Peter."
"Old Mrs Rabbit was a widow. She"
"earned her living by knitting rabbit-wool mittens and muffeties."
"I once bought a pair"
What's the matter, darling? You don't like the story?
Lorenzo...
You don't like the story?
He does that a lot lately.
When? -Mainly at story time.
Sweetheart...
Listen carefully to Mama.
Is your middle name Patrick?
No... Is it Peter?
No, Mommy.
Is it Michael? Michael Murphy?
Yes! Yes!
Only you don't know how to say that.
Will you teach Mommy how to say no?
When you close your eyes, does that mean no?
Oh, what an idiot! That was a yes question.
All right. You don't want to hear any more Benjamin Bunny, do you?
That's an emphatic reply! Very well, young man.
No more Benjamin Bunny. How could Mommy have been so thoughtless?
We're going to take all of these baby books to the children's hospital.
It's time for the big stuff. Something heroic.
There you go. You gotta tell us what you want.
The Once and Future King by TH White.
"The boy slept well in the woodland nest, where he had laid himself down."
"At first, he only dipped below the surface of sleep...
and skimmed along like a salmon in shallow water,...
so close to the surface that he fancied himself in air."
"He thought himself awake, when he was already asleep."
"He saw the stars above his face,...
whirling on their silent and sleepless axis,...
and the leaves of the trees rustling against them."
"And he heard small changes in the grass."
"These little noises of footsteps and soft-fringed wing beats...
and stealthy bellies drawn over the grass blades."
"A rattling against the bracken at first frightened him, but interested him."
OK. Is it your thumb?
Is it your index finger?
Your middle finger?
Your little finger?
It's your little finger. You think you can move your little finger.
OK. Tell your brain to tell your arm...
to tell your hand to move your little finger.
Come on, sweetheart. Tell your brain to tell your arm...
to tell your hand to move your little finger.
Come on, my friend. What a wonderful thing. A "yes".
And then there'll be a "could be" and a "perhaps"...
and maybe even a "shut up, Mommy", but now we just have to get to "yes".
So tell your brain to tell your arm...
to tell your hand to move your little finger.
Come on, my love. Tell your brain to tell your hand...
to move your little finger.
Come on, Lorenzo. -You can do it, my friend.
You can do it.
Come on, Lorenzo.
UNIVERSITY OF WISCONSIN School of Veterinary Medicine
And they are born without myelin, correct?
The only naturally dismyelinated higher mammals in existence.
And this is passed from mother to son?
Yes.
Their mother is from Edinburgh. That's Jasmine.
She doesn't shake, but her male pups do.
You think you can stop them shaking? -Well, we hope so.
By implanting nerve cells, we expect to see the growth of new myelin.
We've been partially remyelinating rats and mice for ten years,...
and it's repeatable.
But if we could fund this work, it could be the first in higher animals.
And then in human beings, huh?
Well, in time, yes.
Dr Duncan, if I help you raise these funds...
and if we can get the researchers together to collaborate,...
I think we can achieve very much in a very short time.
Augusto, we scientists are a very competitive lot.
Such a collaboration is a lovely idea, but sadly that is not how science works.
That's not necessarily so, because remember the Manhattan Project?
28 months. It took them 28 months.
Now, if scientists can come together to build the atomic bomb,...
surely they come together to remyelinate some puppy dogs?
Papa called from Italy, darling.
He's missing his Lorenzacchio very, very much.
But he wants me to tell you he's making a big dinner tonight,...
a banquet of brain food for the cleverest doctors in the world...
who've gathered together to put the myelin back in the shaking puppy dogs.
And if they can achieve that,...
someday there might be a way to help all the people who've lost their myelin.
Not only the boys with ALD, but the people with multiple sclerosis...
and many other diseases, Lorenzo.
And then think, my brave boy, if they can ever give you back your myelin,...
you'll be able to tell your brain to tell your toes, your fingers, your anything,
to do what you want them to do. -... what I want them to do.
And then, one day,...
I'll hear my voice...
and all these words I'm thinking will get outside my head.
This film was completed at the end of 1992 and so far...
Doctors all over the world have begun to prescribe Lorenzo's Oil.
If a diagnosis is made early enough the treatment stops the disease.
So there is now a growing army of boys kept free from the ravages of ALD.
In recognition of this, Augusto Odone received an honorary medical degree.
He and Michaela continue to raise funds and drive the scientific task force...
known as "The Myelin Project".
The Shaking Pups are successfully growing new myelin.
This means that human trials will begin within a year.
There are many waiting to receive the first brain cell transplants.
Among them is Lorenzo Michael Murphy Odone.
Meanwhile... Lorenzo is 14 years old.
He is now able to move his head from side to side.
He has recovered his eyesight and begun to vocalise simple sounds.
He is learning to communicate by means of a computer.
And so he waits, for what will come next...
Oh! Now it broke!
This is Charles and this is Harry...
and they've both been on Lorenzo's Oil for two years.
My name is Michael Benton and I'm twelve and a half years old.
I've been taking Lorenzo's Oil for four and a half years.
I was diagnosed with ALD when I was 13 years old. I'm taking Lorenzo's Oil...
I've been taking Lorenzo's Oil for three years.
Some of the activities I'm involved in are baseball, basketball...
ãÍãæÏ!!!!!!!!!!