Unexpected Moments of Connection and Humor
Michaela Odone:
Anyhow, it was snowing and he began to rub my hands to warm them.
Deirdre Murphy:
Uh-oh!
Michaela Odone:
No, no, no, he then produced photos of his wife and children.
Deirdre Murphy:
That old routine!
Augusto Odone:
Oh, Deirdre!
Michaela Odone:
Had I'd known this would be the man I would wait ten years for, I would've let you pick up the check.
Lorenzo Odone:
(from outside) Hey, everybody! Look at me! (Laughs happily)
Augusto Odone:
I did pick it up!
Michaela Odone:
Excuse me! You did not! I'm sorry but I… I even left the tip! (Laughs) Look at him, Mother!
Woman:
That's not fair!
Girl:
Lorenzo's fallen off his bike and he is really bleeding!
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
Parental Comfort in Difficult Times
Augusto Odone:
Michaela, let me take him. You need rest.
Michaela Odone:
I'm fine. I could use a cup of coffee though.
Augusto Odone:
Okay.
Michaela Odone:
Lorenzo, Lorenzo, listen to Mama. Can you hear me, my darling? If this is too much for you, my Sweetheart… well then, you fly. Fly as fast as you can to the Baby Jesus. It's okay, Mama and Papa will be okay.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
Medical Uncertainty and Parental Concern
Dr. Judalon:
I'm sedating him as much as I dare. I don't know what else to do.
Augusto Odone:
How can he endure this for so many hours?
Dr. Judalon:
Augusto, I don't think he'll have to endure this much longer.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
Lorenzo's Presentation to Medical Faculty
Immunosuppression Doctor:
The faculty is very grateful to Lorenzo for doing this.
Immunosuppression Doctor:
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're getting so big! I'm gonna put you up here so we can all see you, okay? Attaboy. Ten weeks after diagnosis, we observe hemianopia. The pupillary light reflexes are still intact and, as yet, there is no optic atrophy. However, there is evidence of early occipital lobe involvement.
Lorenzo Odone:
Why are all these people here?
Immunosuppression Doctor:
I beg your pardon, Lorenzo?
Lorenzo Odone:
Why are all these people here?
Doctor:
He asks why all these people are here.
Immunosuppression Doctor:
Well, they're all doctors and they want to learn how to help other boys in the future.
Lorenzo Odone:
Other boys with the boo-boo?
Michaela Odone:
Yes, Darling.
Lorenzo Odone:
Mm-hm.
Immunosuppression Doctor:
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, Lorenzo! Keep coming!
Lorenzo Odone:
Only if you stop talking like that.
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Medical Check-Up and Parental Discussion
Immunosuppression Doctor:
What color's that cross?
Lorenzo Odone:
Red.
Immunosuppression Doctor:
That's right. It's red. I'm gonna speak to your parents but Leah's gonna stay and check your blood pressure, okay? I'll be right back.
Leah:
I'll just put this around your arm.
Immunosuppression Doctor:
Look, it's important you both know what's going on. Cyclophosphamides are no picnic. This is all-out chemotherapy. We're gonna be suppressing his immune system. It's very high-risk We're gonna need to keep him here at least three weeks.
Leah:
That's it.
Immunosuppression Doctor:
Lorenzo's still walking, he's still talking, he's still communicating. But that can all change, now, knowing all of this, do you still want us to go through with this?
Michaela Odone:
Given the alternatives, yes.
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A School of Renowned Medical Experts
Augusto Odone:
It's a school, Lorenzo, like any other school.
Lorenzo Odone:
It's full of doctors?
Michaela Odone:
Yes, Darling. Some of the cleverest in America.
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Understanding Hyperactivity and Structured Activities
School Therapist:
He does present as a Hyperactive.
Michaela Odone:
But Hyperactives repeat tasks endlessly, don't they?
School Therapist:
They perseverate, yes.
Michaela Odone:
Lorenzo's activities all have a shape and structure: beginning, middle and end.
Augusto Odone:
My Gosh, he's learned three languages. How can he be Hyperactive?
School Therapist:
I know it's hard to accept that a gifted child may also be disturbed.
Principal:
I think that Lorenzo needs to be referred to our IDP committee.
Michaela Odone:
What's that?
Augusto Odone:
For what?
Principal:
Individual Disablity Placement. Lorenzo needs to be in a special ed. class.
Michaela Odone:
Any special ed. our son needs will be provided at home.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
Lorenzo's Frustration Unleashed in Chaos
Lorenzo Odone:
(Aggravtedly screaming and yelling while throwing things around.)
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Concern Over Home Issues in School
Young Teacher:
Mrs. Odone?
Michaela Odone:
Another incident?
Young Teacher:
Yes. And today, it was much worse.
Principal:
Mrs. Odone, is there some trouble at home?
Michaela Odone:
Why do you assume the trouble is at home?
Principal:
Because there's nothing here that explains his behavior. It's... disturbed.
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Questioning the Presence of Others
Lorenzo Odone:
Why are all these people here?
Immunosuppression Doctor:
Beg your pardon, Lorenzo?
Lorenzo Odone:
Why are all these people here?
Doctor:
He asks why all these people are here?
Immunosuppression Doctor:
Well, they're all doctors and they want to learn how to help other boys in the future.
Lorenzo Odone:
Other boys with the boo-boo?
Michaela Odone:
Yes, Darling.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
A Moment of Connection and Storytelling
Lorenzo Odone:
Now, hold my hand.
Michaela Odone:
Yes, Sweetie.
Lorenzo Odone:
Now, the story.
Michaela Odone:
And what story is that, Sweetheart.
Lorenzo Odone:
La Notte di San Lorenzo
Michaela Odone:
San Lorenzo, who is?
Lorenzo Odone:
My patron saint and saint to my father's village.
Michaela Odone:
That's right, and what happened to him?
Lorenzo Odone:
He was in Rome and, I forgot.
Augusto Odone:
Well; many years ago, the bad guy says to him Bring me the riches of your church! and Lorenzo, he brings them the beggars and the sick people and he says—
Lorenzo Odone:
These are our riches!
Augusto Odone:
Yes! Bravo, Lorenzino!
Michaela Odone:
That's wonderful, Sweetheart! So clever!
Augusto Odone:
Bravo! And tonight, August 10th, is?
Lorenzo Odone:
La Notte di San Lorenzo.
Michaela Odone:
The night of the shooting stars.
Augusto Odone:
When anything can happen.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
A Mother's Concern for Her Child's Feelings
Michaela Odone:
Darling, how were they annoying you? Were they teasing you?
Lorenzo Odone:
No.
Michaela Odone:
Were they touching your paints?
Lorenzo Odone:
No.
Michaela Odone:
Well, how were they annoying you?
Lorenzo Odone:
They just were.
Michaela Odone:
Doing what?
Lorenzo Odone:
Things.
Michaela Odone:
What kind of things?
Lorenzo Odone:
Things that make me feel annoyed.
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A Celebration of Lorenzo's Intelligence
Michaela Odone:
Here he is! The cleverest boy in the world!
Lorenzo Odone:
(laughs) Hi, Mom!
Michaela Odone:
What's this?
Classmate:
See you tomorrow, Lorenzo!
Lorenzo Odone:
It's, uh, it's a picture.
Michaela Odone:
Oh, my goodness!
Lorenzo Odone:
And, uh, there's the Comoros.The little islands.
Michaela Odone:
Of course, it is.
Young Teacher:
Mrs. Odone, may I have a word?
Michaela Odone:
Very skillful, Sweetheart.
Lorenzo Odone:
And, uh, Jupiter.
Michaela Odone:
Jupiter's next to the Comoros? I'll be right there, Lorenzo.
Lorenzo Odone:
Okay, Mommy.
Michaela Odone:
Yes?
Young Teacher:
Is Lorenzo having any problems at home?
Michaela Odone:
Not that I know of, why?
Young Teacher:
Because today, he suddenly started throwing paints around. He went wild destroying other children's paintings.
Michaela Odone:
Surely, he must've been provoked then?
Young Teacher:
No, it came out of the blue. He's normally such a terrific kid.
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
A Call for Courage in Adversity
Michaela Odone:
The life of one boy is not enough reward for you to risk the reputation of the institution and the esteem of your peers.
Professor Nikolais:
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.
Michaela Odone:
We are not asking, Doctor, for your anguish or your applause. We are asking merely for a little courage.
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Confronting Suffering and Denial in Parenthood
Ellard Muscatine:
When Michael, our first boy, got sick we searched around looking for anything that might help him. You wanna know the best thing that happened? He was taken quickly. Now Tommy... he has lasted three years, and for two of them, he's been without his sight, his mind, everything that makes him a human being, he's a vegetable. Y'know if you would just stop all this denial, you wouldn't do a thing to prolong your boy's suffering and indignity one minute longer.
Loretta Muscatine:
Has it occurred to you that maybe he doesn't want to be around anymore?
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Understanding Illness as a Foreign Journey
Augusto Odone: [[w:Comoros|Comoros]
When we first went to the ], what did we do? We got to know the country, right?
Michaela Odone:
Yes.
Augusto Odone:
We studied, we got to know the language, resources, its law. We studied, right? We should treat Lorenzo's illness like another country.
Michaela Odone:
I don't quite see the analogy.
Augusto Odone:
All right, all right. ALD has many dimensions, right?
Michaela Odone:
Yes
Augusto Odone:
So, in order to understand it, we need to command genetics, biochemistry, microbiology, neurology, ology-ology-ology.
Michaela Odone:
Augusto, we don't have time to go to medical school.
Augusto Odone:
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. Hmm.
Michaela Odone:
But... to miss time with him while he can still speak to us... How can…
Augusto Odone:
Yes, I know, I know. But he expects it of us.
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Questioning the Effectiveness of Dietary Changes
Augusto Odone:
Dr. Nikolais, what about the other boys, what results are you seeing in them?
Professor Nikolais:
As with Lorenzo, it's too early to tell. We need the study to run for the full six months.
Augusto Odone:
And that would tell you what is obvious right now? That avoiding apple skins and pizza has no effect on this brutal disease?
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
The Overlooked Tragedy of Orphan Diseases
Professor Nikolais: [[w:Reaganomics|Reaganomics]
Do you know how many children die every year from choking on french fries? Many more than from Adrenoleukodystrophy. You see, ours is what is known as an orphan disease, too small to be noticed, too small to be funded, especially with the iron hand of "]".
Quotes sourced from Wikiquote (© Wikiquote contributors), licensed under CC BY-SA 4.0. Modified for formatting/length.
