Lorenzo’s Oil

The last photograph of the real Lorenzo Odone, with his father, Augusto

Use of Lorenzo’s Oil for ALD:

-Using the oil is preventative rather than curative

-Works best for boys with the gene for ALD who do not yet show symptoms

-May also slow down the progress of the disease in some boys with symptoms, but far from consistent results

-Lorenzo died at age 30, so obviously the oil did something for him.  Some of the effects of the illness were slowly reversed (e.g., he regained his eyesight and was able to blink or move a finger to say yes or no), but Lorenzo was still essentially bedridden and tube-fed.

Rewrite of a Scene From Lorenzo’s Oil:

(Lorenzo is first diagnosed with ALD)

(The Odones enter, with the doctor holding the door for them.)

Doctor:  Please, have a seat.

(The Odones, and then the doctor sit down.)

So…

 

Augusto Odone: Please, doctor, without equivocation.

 

Doc: There is a family of diseases that is quite rare – the leukodystrophies.  Lorenzo has one of them.  It’s called ALD.  ALD is an inborn error of metabolism that causes degeneration of the brain.  It only effects males, usually between the ages of 5 and 10.  It progresses very rapidly, and as far as we know right now, it is always fatal.  Generally, boys with ALD die within 2 years of diagnosis.

(There is silence for a moment, while the Odones process the news they have just heard.)

 

Michaela Odone: Are you absolutely sure that Lorenzo has… ALD?

 

Doc: Well, he shows the definitive sign – he has an abnormally high level of fats in his blood, certain very long chain saturated fats.  There is an enzyme that should metabolize these fats, but in ALD, the enzyme is defective, so the fats collect in the nerve cells, sort of like cholesterol collecting in the arteries.  The excess fats damage the nerve cells.

 

Augusto: How?  What do these fats do?

 

Doc: Do you know what myelin is?

(The Odones shake their heads no.)

Myelin is the fatty sheath that coats nerve cells like insulation around wire, and helps them to function properly.  The long chain saturated fats degrade this myelin sheath.  There are other diseases that also involve demyelination, but with different causes.  Unfortunately, none of them have very good treatments available yet.

 

Michaela Odone: Is there anything we can do?

 

Doc: Right now, there is no proven cure or treatment.  It is not a very common disease, and it was only recently discovered, so unfortunately any research is still very new.  There are some experimental treatments available, but I have to warn you, none of them have been very promising so far.  If you’d like though, I can give you the names of some doctors to contact to get Lorenzo into a trial.

 

Augusto:  Yes… thank you doctor.

 

Doctor:  I’m sorry there is not more that I can do, but if you have any questions please feel free to ask.  I have a packet here for you to keep that explains ALD, in case you’d like to know more.  It includes some of the most recent articles on ALD.  It’s not much, but there’s not much out there right now.

 

Michaela: (Taking the packet.)  Thank you, doctor….