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You see, Michaela, it's as though he is trapped down in some dark cave. Because he's lost...

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Augusto Odone: 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. Michaela... Do you ever think that - maybe all this struggle, -it may have been for somebody else's kid? Michaela Odone: Yes. But I promised... I promised him - his world would never be silent. - He would never be alone.


Transcript

00:00:01.000 --> 00:00:03.717
Excuse me
00:00:03.785 --> 00:00:07.134
Are you saying that Lorenzo got this directly from me
00:00:07.208 --> 00:00:10.983
Well in the sense that A L D Is sex linked
00:00:11.999 --> 00:00:12.577
yes
00:00:12.649 --> 00:00:16.001
It goes from mother to son
00:00:16.169 --> 00:00:18.503
Then how did I get it
00:00:18.568 --> 00:00:20.772
The woman gets it from her mother
00:00:20.841 --> 00:00:25.096
If I inherited the defect why don't I have the disease
00:00:25.161 --> 00:00:28.576
No the woman is only the carrier nothing else
00:00:28.649 --> 00:00:30.503
but with each conception
00:00:30.569 --> 00:00:34.213
she has a 50 50 chance of passing on the defect

Clip duration: 35 seconds
Views: 153
Timestamp in movie: 00h 23m 16s
Uploaded: 03 April, 2022
Genres: biography, drama
Summary: Lorenzo Odone, a Virginia 5-year-old, develops a degenerative nerve disease so rare that nobody is working on a cure, so his parents decide to immerse themselves in research and tackle the problem themselves.


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