Lorenzo's Oil Page #2

...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.

- Um...

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.

Mommy 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 occipital-lobe 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.

- Mm-hm.

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?

- Odo-ne.

- Odo-ne? 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...

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