- One orange.
- One orange.
- Chungwa moja.
- Chungwa moja.
- Two oranges.
- Two oranges.
- Machungwa mawili.
- Machungwa mawili.
- One pineapple.
- One pineapple.
Omouri. Omouri.
Here he is, the cleverest
boy in the world.
- Hi, Mum.
- What's this?
- It's a picture.
- Oh, my goodness.
- And there's the Comoros.
- Of course it is.
- Mrs Odone, may I have a word?
- Very skilful, sweetheart.
- And Jupiter.
- Jupiter next to the Comoros?
- I'll be right there, Lorenzo.
- Ok, Mummy.
Is Lorenzo having
problems at home?
Not that I know of. Why?
Today he started
throwing paints around.
He went wild, destroying
other paintings.
- He must have been provoked.
- No, it came out of the blue.
He's normally such a terrific kid.
- Darling, were they teasing you?
- No.
- Were they touching your paints?
- No.
- How were they annoying you?
- They just were.
- Doing what?
- Things.
What kind of things?
Things that make me feel annoyed.
- Mrs Odone...
- Another incident?
Yes, and today it was much worse.
Mrs Odone, is there
some trouble at home?
Why do you assume the
trouble's at home?
Because there's nothing
here that explains
his behaviour. It's... disturbed.
(Italian opera on radio)
He does present as a hyperactive.
But don't they repeat
tasks endlessly?
They perseverate, yes.
Lorenzo's activities all have a
structure: beginning,
middle and end.
My gosh, he's learned
three languages.
How could he be hyperactive?
I know it's hard to accept that a
gifted child may
also be disturbed.
Lorenzo needs to be referred
to an IDP committee.
- What's that?
- For what?
Individual Disability Placement.
Lorenzo needs to be in
a special Ed class.
Any special Ed our son needs
will be provided at home.
Anyhow, it was
snowing and he began
to rub my hands to warm them.
Oh.
No, he then produced photos
of his wife and children.
- That old routine.
- Oh, Deirdre.
Had I known this was the man I
would wait ten years for...
I'd have let you
pick up the cheque.
I did.
Excuse me. You did not.
Lorenzo's fallen off his bike
and he is really bleeding.
That's a boy.
Oh, such a brave boy.
Doing just fine, here.
You're going to be ok.
It's Christmas Day, you know.
All across the country little boys
are trying out their new bikes.
Hey, champ. I think you'd better
tell your folks to lighten up.
What are they gonna do when
you're playing for the Redskins?
The EEG is normal, the skull x-ray
is normal and the
CT scan is normal.
I don't know what to tell you.
This boy is neurologically intact.
Doctor, we spent three
years in East Africa.
- In the Comoros.
- We were wondering...
Well, if he might have picked
up some rare parasite.
It's possible.
Lorenzo, what are you doing?
Lorenzo.
Sweetie? Can you hear Mummy?
This may be an auditory
processing difficulty.
The ears hear all right, but the
brain has trouble listening.
So, this means something
is affecting his brain.
But what? A tumour?
Multiple sclerosis?
It could be any one
of a dozen things.
Listen, my friend.
I'd like you to come
and stay in the hospital
for three days.
Your mum and dad can come too.
We're gonna run some tests and
get to the bottom of this.
Can you hear the sound?
Keep your eyes right on that
spot for me. That helps me out.
All right. Now close your eyes.
Keep your eyes closed,
buddy. Stay nice and still.
Of course, Easter festivals
existed long before baby Jesus.
In pagan times, they marked
the beginning of Spring.
The egg tells us that
the earth is going to
be reborn, just like
a little baby chick.
- I get it.
- Mrs Odone. Mr Odone.
Dr Judalon is ready now.
Hey, Lorenzo, would you like
to go feed the goldfish?
It's all right,
sweetheart. Go ahead.
We'll be right back in just
a few minutes. Go ahead.
This way, please.
Please, have a seat.
Well, we certainly don't
need that noise, do we?
So...
Please, Doctor,
without equivocation.
There is a family of
diseases. It's quite rare.
The leukodystrophies.
Lorenzo has one of
them. It's called ALD.
ALD is an inborn
error of metabolism
that causes a degeneration
of the brain.
It only affects males, usually
between the ages of five and ten.
Its progress is relentless.
The end is inevitable.
All boys with ALD die, usually
within two years of diagnosis.
And there are no exceptions?
I am so sorry.
- Are you absolutely sure?
- Yes.
Lorenzo shows the definitive sign:
an abnormally high
level of fat in his
blood, certain long-chain
saturated fats.
Oh.
These fats... destroy his brain?
But how?
There is an enzyme that should
metabolise these fats...
but in ALD boys it's defective.
So they collect in
the nerve cells, a
little bit like a cluster
on the arteries.
And... in some way...
this liquefies the white
matter of the brain.
"Some way liquefies?" Could
you be more specific?
Well, to be honest, we're not
quite certain just how it works.
- You know what myelin is?
- No.
Myelin is the fatty... sheath
that insulates the nerves.
It's a little bit like plastic
around electrical wires.
Without it, the nerves
cannot conduct an impulse.
What ALD does is strip away the
myelin. It corrodes
it, if you like.
This causes degeneration
of the brain
and the body loses its functions.
But surely someone, somewhere,
must be working on this, no?
- We would go anywhere.
- Yes.
Ten years ago the disease
hadn't even been identified.
We're still trying to
understand just what it is.
I would like to offer
you some hope, but...
Then there's absolutely
no treatment?
Normally at this point we
try to be constructive.
We try to focus on
what can be done.
But in this case...
When we get home, can
we read a story?
Of course, my darling.
Lorenzino, let's go home.
Mr Odone? I have a Dr
Judalon on line three.
Good. Put him through.
They're waiting for
you in the meeting.
All right, thank you.
- Hello?
- Augusto?
I just got off the phone
to Gus Nikolais...
a professor of neurology at the
Institute of Childhood Diseases.
If there is a so-called
"world expert"
on the leukodystrophies,
Nikolais is it.
Ah, good.
I don't want to raise
false hopes...
but he's working
on an experimental
protocol based on a diet.
Wonderful.
Peanut butter, red meat, cheese...
Unpeeled fruit, spinach, olive
oil... But these
are healthy foods.
Yes, but they contain very
long-chain saturated fats.
I...
I still do not understand why
they are so harmful to Lorenzo.
Why are they so destructive?
How can spinach make
the difference?
The human body needs these fats
in order to create cells...
and the excess is b*rned off.
That's normally, of course.
But in the case of
an ALD boy, these
saturates can't be broken down...
and they build up in the brain.
And somehow this build-up
strips the myelin covering.
Yes, exactly. And, for the moment,
we don't know why this is.
But we feel that,
by withdrawing the
saturated fats from the diet...
we will prevent them
accumulating in the brain.
And if we could?
There's no way to reverse
neurological damage.
All we can hope for is to
slow the cascade of symptoms.
But if it's any consolation to
you, you'll be helping us...
understand the biochemistry
of this heartless disease.
So, can we enrol
Lorenzo in our trial?
I suppose so.
Good. Then I will pass you
over to our dietician...
and meanwhile we should arrange
some genetic counselling.
Oh, Dr Nikolais,
it's highly unlikely
that we will have another child.
No, but your sisters and their
daughters may all be carriers.
- We need to test them.
- Only my family? What about his?
No, no. ALD is passed
only through the mother.
But I thought you
understood all this.
We knew it was inborn, but...
we assumed that meant a
combination of our genes.
That's true in other
inherited diseases...
but ALD is only carried
on the female chromosome.
Excuse me.
Are you saying that Lorenzo
got this directly from me?
Well, in the sense that
ALD is sex-linked, yes.
It goes from mother to son.
And how did I get it?
The woman gets it from her mother.
And if I inherited the defect,
why don't I have the disease?
No, the woman is only the
carrier, nothing else.
But with each
conception, she has a
50-50 chance of passing
on the defect.
And when that happens...
It's the cruellest kind
of genetic lottery.
- Lottery?
- Yes, a clumsy word.
I use it because it's...
so arbitrary, you know.
No one is to blame.
If Michaela's mother had this...
and her mother's mother...
why was there no warning?
Well, I suppose if you went back
into the family tree, you'd...
But remember, a
short time ago this
disease didn't even have a name.
Mrs Odone, you have enough
to put up with without...
You have nothing to
blame yourself for.
Thank you.
It's not a good idea.
All right, so she
doesn't want me. What
about Mother? She's
packed and ready.
Kenise, Michaela doesn't
want anybody around.
What about Father
Killian? He can come.
Hell, no. She's not
even going to Mass now.
Deirdre, what is happening there?
Just let it rest, ok?
No. What will they do
for Lorenzo's birthday?
- I'll call you. Bye.
- No. Deirdre.
This is wrong. More than ever
she needs her family here.
She doesn't want nobody.
She's too angry.
We cannot afford the
time to be angry.
Come on, look what
she's dealing with.
She does not have to
deal with it alone.
She feels incredibly
alone and unlucky,
like she's been
singled out by God.
Oh, Deirdre.
Yes. Kenise is a carrier
with two girls.
Me, a carrier with
no kids at all, and
Mariah has a boy but
she's not a carrier.
So only Michaela gets
this laid on her.
This did not happen
only to Michaela.
Sure. You got two
kids already, Odone.
Mummy will make you
something better:
a big-boy fruit treat with
five different colours.
She waited all this
time to have one
child. She's not
gonna have another.
Francesco. Cristina.
- Ah, buongiorno.
- Oh, Francesco.
- Cristina.
- Michaela.
Ciao.
Everyone, this is Lorenzo's sister
and brother, all
the way from Rome.
This does not make sense.
Lorenzo's saturated
fats have risen.
We eliminate them from his diet,
and in his blood they increase.
If these very long-chain saturated
fats are destroying his mind...
then surely we should
take him off the diet.
Mr Odone, please be patient.
Your son has been on
the diet only six
weeks. Wait until the
end of the trial.
Dr Nikolais, what
about the other boys?
What results are you
seeing in them?
As with Lorenzo, it's
too early to tell.
We need the study to run
for the full six months.
That will tell you what
is obvious right now...
that avoiding apple
skins and pizza
has no effect on
this brutal disease.
Now, please, Doctor,
is there anyone out
there who is chasing a
definitive therapy?
You judge us too
hastily. The French
have tried bone-marrow
transplants...
and in Boston we're about
to try immunosuppression.
Why haven't we heard
of these before?
The transplants were disastrous...
and the immunosuppression
is highly experimental.
The protocol has been
limited to six boys...
all more profoundly
afflicted than your son.
For God's sake. How afflicted
does he need to be?
It's a school, Lorenzo,
like any other school.
And it's full of doctors?
Yes. Some of the
cleverest in America.
- What colour is that cross?
- Red.
That's right. It's red.
I'll speak to your
parents for a second.
Leah's gonna take
your blood pressure.
I'll be right back.
I'll just put this
around your arm.
You've had this done
before, haven't you?
Look, it's important you both
know exactly what's going on.
Cyclophosphides are no picnic.
This is chemotherapy.
We're gonna be suppressing his
immune system. It's
very high-risk.
We'll need to keep him
here at least three weeks.
Now, Lorenzo is still walking,
talking and communicating.
But that could all change.
Now, knowing all
this, do you still
want us to go ahead with it?
Given the alternatives, yes.
The faculty is very grateful
to Lorenzo for doing this.
Ladies and gentlemen,
this is Lorenzo
Odone, whom I've
spoken to you about.
Now, young Mr Odone, you
need to come with me.
You are getting so big.
Now, I'm gonna put you up here
so we can all see you, ok?
Attaboy.
Ten weeks after diagnosis
we observe hemianopia...
with transient
horizontal nystagmus.
The pupillary light reflexes
are still intact...
and, as yet, there's
no optic atrophy.
However, there is evidence of
early occipitalobe involvement.
Why are all these people here?
- I beg your pardon, Lorenzo?
- Why are all these people here?
He asks why all these
people are here.
Well, they're all doctors...
and they want to learn how to
help other boys in the future.
Other boys with the boo-boo?
Yes, darling.
Thank you, Lorenzo.
Now, in the scanning
speech, we look
for both ends of the pathology:
centrally for the dysphasia, and
peripherally for the dysarthria.
Now, Lorenzo, would you
walk for me, please?
Attaboy.
That's right. Hold my hands.
That's right.
Two months ago there
was simply motor
lag. Now note the
characteristic gait.
It's due mostly to
hyperreflexia, but
exacerbated by the
encroaching paresis.
You're doing very
well. Keep coming.
Only if you stop
talking like that.
Hello, Mr Odone. Have
I got that right?
- Odone.
- Odone? I'm sorry.
Ellard Muscatine. I'm
with the ALD Foundation.
We heard about your
boy Lorenzo, and
we'd like to offer you some help.
You're a doctor?
Doctor? Heck, no. I'm
a machinist from
Allequippa, PA, but
I'm an ALD parent.
This is my second
time around, so I
know exactly what
you're going through.
My wife Loretta and I,
we run the foundation.
We organise counselling, conduct
seminars, fund research.
We have 500 member families,
not only American...
but from Portugal, Israel,
Japan, Australia...
And we're growing all the time.
We wanted you and Mrs Odone to
know that you're not alone.
Hi. Ellard Muscatine.
Welcome to the conference.
- Augusto Odone.
- Michaela.
Oh, very nice to meet
you. Please come in.
This is my wife Loretta,
and these are the Odones.
Great. I'm so happy you
were able to come.
Because I think a lot
of it is denial.
We don't want to say
anything's going
on. We're strong and
we can handle it.
But this is the place and this
is the time to let it all out...
let the barriers come down...
and to share your feelings
and get it off your chest.
It's hard to believe that
things can get worse.
But they will.
One thing nobody wants to
talk about is what happens...
or does not happen, between the
two of you in the bedroom.
A whole year we couldn't
touch each other.
My husband stood by me all the way
but, oh my, does it test the men.
And the weak ones just up and go.
Even the strong ones leave.
My guy hung in there
when our first boy
took sick. Then we had
little Jake tested.
Arlen wanted a whole bunch
of boys, a whole ball team.
He's gonna have 'em too...
with some other gal.
We'd like to thank the parents...
who gave so generously to the fund
for the immunosuppression trial.
The doctors have said that this
experiment contributed greatly...
to the understanding of ALD.
Betty and Tom Knowles,
$250 in memory of Corey.
Dr and Mrs Liebowitz,
$500 in memory of Joel.
Mr and Mrs Higgins, $1,000 in
memory of Adrian and Julian.
26 people have sent in
recipes for the newsletter.
Now, we still need ideas for snack
foods and breakfast treats.
Remember, all recipes
should be low-fat...
and use only the foods allowed
on the institute diet.
- Excuse me.
- Yes, ma'am?
Our son has complied
with this diet...
but his levels of
saturated C24 and C26
have risen for two
months in a row.
That's exactly what's
happened to Jaybird.
Ah, well, perhaps before we talk
about publishing cookbooks...
we should ask ourselves if
the diet is working at all.
- Shouldn't we?
- Damn right we should.
This is not the way
we do things here.
But there are two
families here with
this paradox. Maybe
there are more.
Shouldn't we open
it for discussion?
- My boy's levels are rising.
- Now there are three families.
So maybe we should... Could
we have a show of hands?
Then we'll see how many
families there are.
You don't understand.
This is a formal
pilot study. It has to
run for six months.
We're not scientists. We
don't interpret experiments.
That's the solemn
responsibility of the doctors.
Come on, Ellard. Let's
have a show of hands.
No, that would be misleading.
The medical folks call this
kind of evidence anecdotal.
What's wrong with a show of hands?
It wouldn't have any meaning.
- Excuse me. May I say something?
- Sure.
The only way that
the doctors can get
useful results is with
a strict protocol...
and statistical samples
in a control group.
And a proper time frame.
Doctors have to be careful.
Clinical trials must withstand a
tremendous amount of scrutiny.
This is the way that
medical science works.
That's the only way the scientists
can get the information they need.
So what you're saying
is that our children
are in the service
of medical science.
How foolish of me. I
always assumed...
that medical science was in
the service of the sufferers.
Yes. Thank you.
Now I think it's time we
get back to our agenda.
Why? So we can discuss
further salvaging
our marriages and
managing our grief?
What about the children? No one
here is discussing the children.
Thank you.
Now if Mary has nothing
further to add,
I would like to
introduce Dr Chapel...
to talk about the nasogastric
tube and suction machine.
Would you all join me in giving
him a very warm welcome?
Thank you, Madam President. Thank
you, Ellard. Ladies
and gentlemen...
(♪ classical music)
- Now hold my hand.
- Yes, sweetie.
- Now the story.
- What story is that, sweetheart?
La notte di San Lorenzo.
San Lorenzo, who is...?
My patron saint.
And saint of my father's village.
That's right. And
what happened to him?
He was in Rome.
And... I forgot.
Well, many years ago...
the bad guy says to him "Bring
us the riches of your church."
And Lorenzo, he brings them the
beggars and the sick people...
- and he says...
- "These are our riches."
Yes.
Bravo, Lorenzo, bravo.
That's wonderful,
sweetheart. So clever.
And tonight, August 10th, is...
La notte di San Lorenzo.
The night of the sh**ting stars.
When anything can happen.
Micha...
When we first went to the
Comoros, what did we do?
We got to know the country, right?
Yes.
We studied. We got to know the
language, resources, its laws.
We studied, right?
We should treat Lorenzo's
illness like another country.
- I don't quite see the analogy.
- All right, all right.
- ALD has many dimensions, right?
- Yes.
So in order to
understand it, we need a
command of genetics,
biochemistry...
microbiology, neurology,
ology-ology...
Augusto, we don't have time
to go to medical school.
Michaela, the doctors are in the
dark. They're groping in the dark.
They've got Lorenzo on
a turvy-topsy diet.
And that bloody immunosuppression
is brutal and useless.
Michaela, we should
not have consigned
him blindly into their hands.
He should not suffer
by our ignorance.
We take responsibility.
So... we read a little.
And we go out and
inform ourselves.
But... to miss time with him while
he can still speak to us...
Yes, I know, I know. But
he expects it of us.
I want to take Lorenzo
off the diet.
He's been eating cardboard for 19
weeks, and what's it getting us?
And feed him what?
Normal foods. Things
a child likes.
Full of the long-chain fats that
we know destroy his myelin?
Look. On the diet, his blood
fats are still rising.
- Yes, I know, Michaela.
- It doesn't make any sense.
But we don't know enough.
We don't know enough.
We don't know it clearly enough.
Here, Michaela, let me
show you something.
All right, here.
Un piccolo acquaio.
- A kitchen sink?
- Yes, yes. Little kitchen sink.
All right. Now here is the tap.
And here's the sink basin
and the plughole, right?
All right. Very
long-chain saturated fats
are introduced by
what we eat, right?
Yes?
Now, also produced by the body...
or manufactured by the body,
these very same fats.
- Biosynthesis.
- Biosynthesis, right.
Now, normally they
are not harmful...
because this enzyme eliminate
the excess, right?
But in Lorenzo, this enzyme
is defective from genetics.
His plughole is blocked, right?
Yes.
We know that very
long-chain saturated
fats are made up of carbon atoms.
C2, 4, 6, 8... all the
way up the chain, right?
But in Lorenzo, the
saturated C24 and C26...
rise to four times
the normal level.
Ok, now, here's where we have a
little paradox, a mystery, ok?
Why, when we reduce the dietary
intake of saturated fats...
does the level in our sink, which
we would expect to go down, go up?
So, logically, we should
take him off the diet.
Well, Michaela...
just as logically, we should not.
Because let's not do
what the doctors did.
Let's not act without knowing why.
Why, when we turn off this tap,
does the level in our sink rise?
I married a plumber.
You married a man
with a simple mind,
who asks simple
questions, that's all.
Here, Michaela. Brain food.
- Come on.
- Oh. Thank you.
Polish rats. I think I have an
explanation for the paradox.
Lorenzo, kiss your clever mother.
Polish rats with a
fatty-acid storage
disease. Let me use
your kitchen sink.
Here's our tap for what we eat.
And here's our tap
for biosynthesis.
I see. Biosynthesis.
When the rats were deprived of a
specific fat in their diet...
their body cells compensated
by overproducing it.
So if this holds
true for humans...
Then the diet is useless...
unless we can stop
it overproducing,
slow down biosynthesis, sì?
Yes, and there's
more. And for this,
I deserve two kisses, my darling.
In the summary, it talks about the
concept of fatty-acid
manipulation.
- What's that?
- Well...
they stop the rats producing
one kind of fat...
by loading their diet
with another kind.
So maybe we could stop Lorenzo's
body from producing C24 and C26...
by loading his diet
with another kind
of fat, one that's less harmful.
We should have this translated
as soon as possible.
I have some news too.
It's a letter from Omouri.
He wouldn't open it
until you got home.
- Omouri.
- Yes.
Michaela, by tomorrow morning...
your Polish rats will be
speaking to us in English?
I've been thinking.
I found that article
by accident. I
just as easily could
have missed it.
It was written by a
Polish biochemist,
who I'm sure knew
nothing about ALD.
Well, Michaela, still it gives
us a new line of inquiry.
Yes, but it could take months.
And there will be
other leads that take
more time, and it's
time we don't have.
All these experts,
working in isolation,
each one on his own
piece of the jigsaw.
Of course, a symposium
is the best way to
accelerate the exchange
of information.
In that sense, it's a
very good idea, Mr Odone.
Only... May I say something?
Have you any idea how
many children in
the United States
die every year...
from choking on French fries?
Many more than from
adrenoleukodystrophy.
Ours is what is known
as an orphan disease.
It's too small to be noticed,
too small to be funded...
especially with the iron
hand of Reaganomics.
So while, as I say,
this remains a very
good idea, it's a
luxury we can't afford.
Well, we appreciate that, so
we have prepared a budget...
based on 40 participants
for two days.
We think it can be
done for $35,000.
My wife and I will
raise the money.
We can't ask you to bear the cost.
Oh, no, no, no, no.
That's the least of our concern.
And of course, your institute
will not be at risk...
because the Odones will
underwrite any shortfall.
And we took the liberty of
drafting an invitation list.
Forgive me, Dr Nikolais. We
wish to make two conditions.
We would like the symposium
to emphasise therapy...
and Michaela and myself would like
to participate in the discussion.
Martha, I'm afraid we'll have
to add to your workload...
but it's in a very good cause.
We've decided to convene the
first symposium on ALD.
We should notify the Muscatines.
Of course. The foundation could
help with the arrangement.
They could even, perhaps...
find some funds.
How about we hook it
to the back of the
next Foundation Family Conference?
- When would that be?
- Next summer. 4th of July.
- That's nine months away.
- It will take us all that time...
to invite those busy doctors
and raise the money.
I don't think so.
What's your time frame, Mrs Odone?
Five weeks from
now. November 10th.
That's not possible.
Oh, I think it is.
Pardon me, but what is
the point of rushing?
As ALD parents, we both know the
answer to that inane question.
If you want this to happen, you're
going about it the wrong way.
At least we are going about it.
- Sorry, I don't understand.
- He wants his diaper changed.
Mrs Muscatine, look... Hello?
Hello?
They should be hung
by their eyelashes.
- They won't help?
- It doesn't look that way.
- Good boy. I'll take him.
- No, I got it.
What'll you do?
Mortgage the house?
Not until I have to.
Michaela.
I've spent two months pulling on
the heartstrings of Washington...
to raise money for
multiple sclerosis,
sudden infant death
and cystic fibrosis.
Then why exclude
adrenoleukodystrophy?
Because I also cover politics, the
arts, women's issues and stuff...
and my readership likes
to have a little balance.
I cannot do another medical story
right now. Maybe in another month.
Joyce, I think you
should meet my son.
My friends...
This is so generous.
You know, Augusto, our wives are
eager to form a committee...
to, perhaps, help
with hospitality.
Oh, wonderful, wonderful.
Not only will we be saving money,
but they'll be extremely well fed.
For breakfast, French pastry,
correct? Lunch, UN finger food.
The British will do afternoon tea.
And for dinner, I know a
marvellous Italian cook.
Are you needing another
pair of hands? I'll
lick envelopes, serve
coffee, whatever.
And this is for your
boy. I grow the
best organic produce in Virginia.
- Thank you.
- You don't remember me.
Wendy Gimble. Foundation Family
Conference. I yelled
louder than you.
Yes, of course. You have two boys.
We lost Jaybird, but
Jake here is fine.
We think what you're
doing is fantastic.
Hello, Jake. Come
on in. Thank you.
When I read about what
you were doing, I
thought "It's time
we did something."
Please, come in and
meet the others.
Is that Lorenzo?
Yes. Lorenzo, this is Jake.
He's a young man of your age.
Look, Lorenzo, a
great big pumpkin.
Let's go down and
feel how big it is.
What, sweetheart?
I'm sorry, Lorenzo.
Let's try that again.
This morning I could
still understand him.
When we can clone the ALD gene, we
can identify the
deficient enzyme...
mass-produce the gene, implant
it into ALD sufferers...
- and normalise their metabolism.
- How long would that take?
Seven to ten years.
You see, science has
its own time...
and, very often, any new advance
can be a matter of serendipity.
For the last six months, all our
ALD boys have been on a regimen...
which excludes
saturated C24 and 26.
But despite this
restriction in the diet...
these long-chain fatty acids
have remained the same...
in some cases even increasing.
Now, this compensating increase
I put down to biosynthesis.
But, Gus, if you could
maintain the diet...
and somehow inhibit biosynthesis,
you'd have a therapy.
No, you wouldn't quite
have a therapy.
You would have a way of lowering
the fatty acids to normal.
(speaks Japanese)
If you wish to inhibit
biosynthesis...
have you considered
fatty-acid manipulation?
(speaks Japanese)
There is some literature, a
rat study, Russian or Polish.
Polish. Straszak. I
have copies right here.
Polish Journal of Biological
Sciences 1979, Volume II.
They loaded the diet
with one fat and
decreased biosynthesis of another.
Yes, I remember this article.
And also in Canada, they have seen
the same thing in miniature swine.
As a matter of fact, I've
seen it in human cells.
In human ALD cells.
From patients with ALD, I took
fibroblasts, skin cells, ok?
Each one carries the
same genetic defect.
I incubated them
with oleic acid and
reduced the saturated
C24 and C26...
- by more than 50%.
- Excuse me, Doctor.
You said oleic acid?
Yes, monounsaturated C18, the
main component of olive oil.
Surely this is the
basis for a therapy.
Slow down.
These are studies in
cultured cells. We
don't know it'll work
in a human being.
Well, then, take the olive oil and
try it in a patient and see...
Augusto, olive oil is forbidden
in the diet: C24, C26.
Yes, but then use whatever
Dr Rizzo fed his fibroblast.
Pure oleic acid would
be very toxic to
an intact organism,
an animal or human.
It would need to be the
triglyceride form,
which is edible, but
that's not available.
All right, can't you take ordinary
olive oil and extract
the C24 and C26?
You could, but it's
a very complicated
procedure and would
be very expensive...
especially to produce the
quantities for a clinical trial.
Have you contacted
chemical companies?
No one will tool up for that.
Not for an experiment, not for
something with no market.
- Then you haven't tried?
- No.
If we were able to
get triglyceride,
then we can change
all that, right?
Yes. It has to be
triglyceride to be edible.
Edible form. Triglyceride.
No one here can help you.
Then do you know
anyone else who does?
I'll send you back
to the switchboard.
- Which extension, please?
- Research and development.
R&D.
I need a triglyceride
form of oleic acid.
Your name, Doctor?
- No, I'm not a doctor.
- Are you with a company?
No, I am not with any company.
I'm the mother of a sick child.
- A mother?
- That's right.
- And you want...?
- Oleic acid.
- The lines are busy.
- I'll wait.
Papa makes you spaghetti
al pomodoro...
seasoned with basilico, the
royal herb for our prince.
Badabib, badabab, badaboom.
Come on, Lorenzo, take a
little bit. That's a boy.
The best lead came
from the symposium:
oleic acid in the
triglyceride form.
Now it's our only
hope for Lorenzo.
Don't fret, Mrs Odone. You will
hear from him within the hour.
- You can be sure of it.
- Thank you. That's 301...
Don't worry, I have the number.
- Thank you very much.
- You're welcome. Bye-bye.
So, as the swallowing
reflexes weaken,
he's less able to
handle his own saliva.
We'll all have to be
pretty vigilant. We
really have to stay
on top of this thing.
If we allow any saliva
to get down into his
respiratory tract,
we block his airway.
We don't wanna do that.
Here we go. Put your
thumb over the valve.
When you don't want suction,
release your thumb.
Hi. It's ProtoChem again. I'll
connect you to our Mr Pellerman.
I believe you want
some oleic acid.
Yes, in triglyceride form.
You're lucky. We're
testing a glycerol
trioleate here as an
industrial lubricant.
Industrial? Then... is it
fit for human consumption?
I don't see why not. It's
a purified olive oil.
Without saturates?
Pure monounsaturated
C18 in triglyceride form?
- Yes, ma'am.
- You're sure?
It happens we have one bottle
here, sitting idle on the shelf.
Marvellous. How can we
get our hands on it?
- Sorry. Go ahead.
- How can we get our hands on it?
This is... beautiful.
And it's entirely harmless?
Gus, you're talking to an Italian.
It's only olive oil.
Yes, that's harmless.
It's like... sugar.
And yet, to a diabetic,
sugar can be lethal.
You see, the trouble
is we don't know to
what extent Lorenzo
can metabolise fats.
Yes, well, Gus, it's been seven
months since Lorenzo
was diagnosed.
Now he is silent. He's immobile.
Augusto, I am a scientist...
and I'm of absolutely no
use to you whatever...
unless I can maintain
my objectivity.
And I am not a scientist.
I am a father.
And nobody can tell
me what dressing
I put on my kid's salad, ok?
Augusto...
This science of medicine. You
know, it's not like physics.
There's no mathematical certainty.
And because we deal
with human beings
who suffer, it can
appear heartless.
I know.
You realise that any collaboration
of mine would have
to be unofficial?
Sì, sì, of course. Now, the
dose. We think 40 grams a day.
- That's too much. Say 30.
- 30?
Yes. Any more than that might
damage your son's liver.
Darling, they're about to start.
We're going to send
this blood away to
establish a baseline,
my brave boy.
Because today we all start the
fight against the boo-boo.
There. All done.
Lorenzino, this year we celebrate
Thanksgiving a little early...
with a fine barracuda like we
used to eat in the Comoros, huh?
And Papa has cooked it
with the aromatic dill.
And now...
we add the special olive
oil which Mama found.
All right?
There we go.
Deirdre.
All right, Lorenzo. Here we go.
There we go.
You did good, buddy
boy. Real good.
Your Aunt Deirdre means
"well", darling.
In this house, we
cherish our adverbs.
I expect you to do the same
when you get your voice back.
Hello?
Mrs Odone, this is Dr
Nikolais's office.
I have Lorenzo's
results. There's been a
small drop in the
saturated C24 and 26.
- About 15%.
- 15%?
Dr Nikolais said not
to get carried away.
It could be a
spontaneous variation.
Am I allowed a tiny squeak of joy?
We'll know more next month.
Thank you.
Michaela.
Augusto. Get something
to hold down his tongue.
Oh, my baby.
So, this is a kind of
seizure, like epilepsy?
No, not a seizure.
It's a paroxysm. It's
triggered by saliva
in the windpipe.
- But we suction him.
- Regularly.
I know, but even so, some saliva
gets caught in the trachea.
In any other child, a cough
would get rid of it.
In Lorenzo, it becomes a
scrambled chain of reflexes...
that amplifies into what
you have just seen.
If this happens again,
what can we do about it?
Just help him try to ride it out.
We're all flying
blind here, folks.
The best I can offer is sedation.
But if it's not epilepsy,
then he's aware
of what's happening
while it's going on?
Well, it's possible.
And if he has another episode,
we could talk him through it.
It's possible, Michaela.
It's possible.
Sì, sì. A 50% drop, right?
That's correct.
Thank you very much. Thank you.
Fantastico. Fantastico.
I very well understand
that we are not
scientists, but we
have observed this...
Let us do it our way,
Augusto. Trust us.
- I've got to go.
- Ok. Thank you.
Goodbye.
Nikolais says it's
very interesting.
Interesting? A 50% drop?
But it's too early to
draw a conclusion.
Rizzo might consider a trial.
And he asked us not to
tell the other parents.
What?
It's immoral. Something finally...
- The parents have to know.
- We'll tell them. They can judge.
The foundation has a mailing list.
We'll call the Muscatines.
I can eat crow in the
name of a good cause.
Michaela...
Mm. Delicious. That was worth
driving 300 miles for.
- Now, my friends... dessert.
- Here, let me move this.
And Loretta... a little science?
Thank you.
"Dear ALD parents..."
You want us to send this out?
Yes. We'll pay for
copying and postage.
But you're advocating a therapy.
No, we're merely reporting a
positive advancement in the diet.
It would be wrong to keep
it from the other parents.
Mrs Odone, we have an advisory
board of eminent doctors...
and we take our
guidance from them.
They are the ones with
the medical degrees.
Yes, my dear, but Nikolais
already knows about this...
and the wretched man does nothing.
Because he is a
responsible scientist.
No, because he has another agenda.
All right, Michaela.
Calmati, calmati.
You know, Loretta, sometimes...
the interest of the
scientists is not the
same as the interest
of the parents.
Scientists are human and
sometimes they can be wrong.
As president of the foundation,
you represent us, the families.
And you serve the families
best by informing them.
And all we ask is that you please
send this letter to
them, that's all.
Our parents suffer
enough without being
made the victims of false hopes.
We can't give credence
to every jerk
with a pocketful of apricot seeds.
Excuse me, this is
not Laetrile. We're
talking about an extract
of olive oil...
an idea that was put forth by the
scientists at the symposium.
And it works in Lorenzo.
It works in an ALD boy to a
degree that is significant.
Very significant.
Other parents have
a right to know.
We know that this is
a deadly disease,
so they have a right to choice.
And if they feel as we do, they
can put pressure on the doctors.
Because, as parents, we should
challenge these
guys. We push them.
Unless someone is
willing to question,
to provoke, how would
there be progress?
Well, we feel there is progress.
Loretta, we know
that, but all we say
is start a dialectic
with the doctors.
Are you telling us what to do?
We're asking you to
disseminate information.
You gonna teach the doctors? Where
we come from, that's arrogance.
- Arrogance.
- Yes.
It is... arrogance.
It comes from the Latin
word... arrogare.
You know it? You know the
root? What it means?
It means to claim for oneself.
That's the root. It means
to claim for oneself.
And I claim the right to
fight for my kid's life.
And no doctor, no
researcher, no bloody
foundation, has the
right to stop me...
from asking questions which
might help me save him.
And you have no right to stop
the sharing of information.
So you think about it.
Our job is to be there
for the parents.
To comfort them, not to
get them stirred up.
If the doctors think
you have something,
they will tell us in
their own good time.
Their own good time
is not our time.
What? They are so powerful...
They are so powerful that
you would be silent?
They are not gods.
Do you know, this acquiescence
is so disgusting.
You think you know so much.
Let me tell you something.
When Michael got sick, we looked
for anything that might help him.
And the best thing that
happened? He was taken quickly.
Now, Tommy... he has
lasted three years.
For two of 'em, he's been
without his sight, his mind...
everything that makes him a
human being. He's a vegetable.
Oh, boy. If you
would stop all this
denial, you wouldn't do a thing...
to prolong your boy's suffering
and indignity one minute longer.
Has it occurred to
you that maybe he
doesn't want to be
around any more?
Sì, sì. Thank you.
It has to be a mistake.
No, Nikolais says not.
- Augusto...
- Oh, sorry.
- Should we risk raising the dose?
- No, he's too fragile.
Any more might harm his liver.
Lorenzo, listen to Mummy.
You're going to have to be
brave as only you know how.
We're gonna count together,
you and I, all right?
Listen to Mummy's voice and the
boo-boo will let go of you.
One, two...
three, four...
Michaela...
You know, I've been a
nurse for 18 years,
eight of them spent
in ICU paediatrics.
And I know that you can't always
play by the rules, but...
this boy shouldn't be at home.
He should be placed in a
properly equipped hospital.
Why don't you say what you mean?
I'm not comfortable
with this situation.
Well, Lorenzo and I
aren't comfortable
with your lack of comfort.
I can't continue to
be a party to this.
I gotta give you my notice.
I'll stay until...
- No, you should finish tonight.
- Michaela. Go easy.
Your agency will receive
a cheque in the morning.
Look, Ruth. We're all a
little strung-out here.
She's talking about
placement, Deirdre.
It's a euphemism for "hospice".
Lorenzo has enough to
endure. We will not
expose ourself to
doubt and despair.
She's exhausted. That's all it is.
Look, I don't know. Somebody
had to say something.
Good luck.
Buonasera, Odone.
Look what I found.
Look at this. Would
you look at this.
Let me show you.
Where are we? Right here.
That was June of '83,
just 21 months ago.
You know, it's time you guys
take it easy on yourselves.
Deirdre...
If we knew why it
only work halfway...
then we might know
what to do next.
Augusto, how many mornings
have I found you asleep...
under a pile of research papers
with the lights still on?
And then you wake up and drag
yourself into the office.
How long can you keep this up?
If you get sick, and you will,
what are you gonna do for money?
What are you telling me? For
God's sake, he is my kid.
Yeah, so are Cristina
and Francesco, and
it's been a year since
you've seen them.
Listen to me, ok?
There has to be a
life beyond Lorenzo.
What are you telling me? That
I should give up on this now?
Oh, man. We both know that even if
you get his levels
down to normal...
his brain can't fix itself.
How much myelin does he have left?
Do you ever ask yourself that?
- Deirdre, now that's enough.
- No. Don't bullshit me.
I know you do... but she doesn't.
Not ever.
You have to help me with her. She
doesn't eat, she doesn't sleep.
I'm afraid for her. I
think she's losing it.
You've seen how she is with
him. She just can't let him go.
Poor Deirdre.
Spoken as only a woman who's
never had a child could speak.
Michaela, Deirdre was
speaking out of love.
I am only telling you what I see.
For both your sakes, there has
to be life beyond Lorenzo.
Do you think that
he has no voice? No
will to live? He
asserts it through us.
If you can't see that, there's
no place for you here.
Michaela, for God's sake,
she is your sister.
And I think you're
losing it, Michaela.
Well, then, I think you should go.
Augusto, help her pack her bags.
I'm going back to our son.
You think I'm crazy because
I speak for our son?
I am so sorry. I never
wanted this to happen.
How can I? How can I enjoy
anything when he enjoys nothing?
How can you talk
to me about loving
him when you
trivialise him into...
No. No.
- Mrs Odone.
- Get a tube.
Do you have the tube?
Don't nod, Nancy Jo. Say "yes".
My attention's on Lorenzo.
Darling, look at me. Listen to
Mummy's voice. We're gonna count.
One, two, three, four...
I'm sedating him
as much as I dare.
I don't know what else to do.
How can he endure this
for so many hours?
Augusto...
I don't think he'll have
to endure it much longer.
Michaela, let me take him.
- You need rest.
- I'm fine.
I could use a cup
of coffee, though.
Lorenzo... Lorenzo,
listen to Mama.
Can you hear me, my darling?
If this is too much for
you, my sweetheart...
well then you fly, you fly as
fast as you can to baby Jesus.
It's ok.
Mama and Papa will be ok.
I have rarely seen anything
like this boy's tenacity.
They have a bed
available upstairs.
No, no, no. In a hospice, no.
It'd be easier. On everybody.
But I would not do
honour to Lorenzo.
Michaela. Come.
- What?
- Come. Come on.
- Nurse.
- Yes.
Now, today we eat, moglie
Mia, every last mouthful.
- I'm not hungry.
- No, no, no. You eat.
Sit.
Michaela, you sit. Sit.
From tomorrow morning, the
Odones need all their energies.
Now listen. We set out to
normalise Lorenzo's blood, right?
And with the oleic oil, we got it
half-right, but that was luck.
It was rather more than luck.
No, it was luck.
Merely observation.
Rizzo observed something
in a test tube, right?
We tried it on Lorenzo.
Rizzo observed a 50%
drop in fibroblasts.
We observed a 50% drop in Lorenzo.
Michaela, that is luck.
That is observation.
That is all it is. It
is not understanding.
And until we understand why
this work only halfway...
how can we expect to
succeed all the way?
I need to understand, Michaela.
You need to understand.
So, tomorrow we go
back to the library.
No, no, no. We review
all the literature,
everything on fatty-acid
metabolism...
every word published
in the last decade.
So, eat. You eat.
Whatever energy or time I have
left I want to spend with Lorenzo.
You will not have to leave
him. I will go to the library.
I make copies for you, I
bring it home for you.
Augusto, we are on
our second mortgage.
You can't afford
not to go to work.
Michaela, I will work.
I'll fit it in somehow.
Michaela, this is
important. I need you.
I need you, Michaela.
So eat.
Brava. Bravissima. Bravissima.
Betty. Betty.
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.
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 paper clip, 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?
One, two...
three, four...
five, six...
seven candles.
And Mummy 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?
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?
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,
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 s*ab 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.
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
sub-literate 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 r*cist
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.
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.
(sings in Swahili)
- 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.
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.
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.
♪ I ride an old paint ♪
♪ And lead on an old Dan ♪
♪ I'm going to Montana ♪
♪ To throw the Hoolihan ♪
- Hello.
- Mr Odone?
Odone, 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, I...
Do you have the sample
in front of you?
Yes.
- What is the name on the sample?
- Lorenzo Michael Murphy Odone.
It's Odone.
No, there's no mistake.
- But thank you very much.
- Ok, bye.
♪ Whoopie-ti-yi-yo ♪
♪ Get along, little dogies ♪
- What's going on?
- His levels are normal.
- Play. Play.
- Oh, that's wonderful.
Now, drink it up, son.
Every last drop. Good.
Mum 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?
Mum 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.
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.
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
taking 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.
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.
"One morning, a little
rabbit sat on a bank."
"He pricked his ears and listened
to the tritrot,
tritrot 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, Mummy.
Is it Michael? Michael Murphy?
Yes. Yes.
Only you don't know
how to say that.
Will you teach Mummy
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
Mummy 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, Mummy", 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.
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 b*mb...
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.
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.
Michaela Teresa Murphy Odone,
passed away on June 10th, 2000.
Lorenzo Michael Murphy Odone,
passed away on May 30th, 2008.
Augusto Daniel Odone, passed
away on October 24th, 2013.
Lorenzo's Oil (1992)
Moderator: Maskath3