Lorenzo's Oil Page #3

...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. Uh, thank you.

Uh, 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...

- 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.

Mm-hm.

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 shooting stars.

When anything can happen.

Micha...

Sh, sh, sh.

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. Mm-hm?

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

Rate this script:0.0 / 0 votes