Author's Note: Everything in this article is true, right down to the names of Lorenzo's parents and what they're doing now. Links to more information can be found at the end of this article.
If you were a parent of a seven year-old boy and you found out that he had ALD, what would you do? You'd actually probably run to the library or the ever-famous Wikipedia to look up what ALD is exactly, since it isn't as well known as a disease we know, like cancer. After you looked it up, you'd really be depressed, actually, knowing what will happen to your seven year-old son.
In my biology class, we've been talking about the molecules of life, proteins, lipids and carbohydrates. My teacher talked about a movie that isn't very well known called Lorenzo's Oil. He told us the basic information about the movie and he allowed us to watch it in class. It's probably one of the saddest and most depressing movies I have ever seen in my life.
The beginning is amazing: it tells the story of a young Lorenzo living in Africa with his parents until they decided to leave Africa to live in the US. After they move there, the parents, August and Michaela Odone, start to notice some different behavior in Lorenzo: he's not getting along with the other kids in his class and he's throwing extreme tantrums. They decide to take him to a doctor and they run a lot of tests on Lorenzo to find out what's wrong. They finally decide that the problem is a rare, sex-linked disease called ALD.
Augusto and Michaela don't know what ALD is until a while after the diagnosis. During the movie, Augusto goes to the library to learn about it, and it's probably one of the lowest points of the movie. It really is sad.
Basically, ALD stands for Adrenoleukodystrophy, which, at the time, had only been named ten years prior to Lorenzo's diagnosis. Not much was known about the disease, but the majority of the victims were between the ages of 5 and 10. All victims are males. Over the course of two years, the male would become mute, blind, unable to move, and then die. The end result of the horrifying pain and suffering could end in a coma, and then in death, usually two years after the diagnosis.
Augusto and Michaela refused point-black to accept that there wasn't a cure to ALD at the time and they fought and fought to find a cure. Without going into a really long biology discussion that I don't want to get into at 9 at night, I'll say that ALD is basically where the Myelin is stripped of the nerve cells and very long chains of saturated fatty acids aren't being broken down completely by an enzyme that isn't really functioning.
Over the course of what was thought to be Lorenzo's short life, the Odone's spent all their time and energy finding a cure for ALD and doing everything they could to at least find a way to extend Lorenzo's life. They eventually found it. The cure was a specially-prepared oil, which the Odone's called Lorenzo's Oil.
Since the discovery of Lorenzo's Oil has been made, all the males who have ALD don't have to go through the pain and the suffering that Lorenzo went through. The movie does an accurate description of what happens to boys with ALD. Lorenzo had seizures, he went through chemotherapy and lost abilities to walk, talk, hear, and see. One of my favorite quotes from the movie, and one of the saddest, was said by Michaela to Lorenzo:
"If this is ever too much for you, if you ever think you've felt enough pain, you go to Baby Jesus and he'll take care of you. Mommy and Daddy will be just fine."
However, all the pain he went through was when he was young. Lorenzo Odone is now 29 and will celebrate his 30th birthday on May 29, 2008. As of the end of August 2005, he was living in Virginia with Augusto, while Michaela died in June 2000 due to lung cancer. Lorenzo enjoys swimming and having stories read to him.
Lorenzo, Augusto and Michaela are three of my heroes. Knowing that Lorenzo's parents put so much time and effort into creating an oil to help extend the life of their son really means a lot. If you lived back when Lorenzo was first diagnosed and you had a son who was diagnosed with ALD, too, would you fight for years like Augusto and Michaela did?
Information about Lorenzo Odone can be found at:
http://www.myelin.org/aboutlorenzo.htm
http://en.wikipedia.org/wiki/Lorenzo_Odone#Famous_patients
Information about Augusto and Michaela Odone can be found at:
http://en.wikipedia.org/wiki/Augusto_and_michaela_odone
Information about the movie Lorenzo's Oil can be found at:
http://www.imdb.com/title/tt0104756/
http://en.wikipedia.org/wiki/Lorenzo's_Oil
Information about the actual Lorenzo's Oil and ALD can be found at:
http://news.bbc.co.uk/1/hi/health/3907559.stm
http://rarediseases.about.com/cs/ald/a/041301.htm
This is bluebag, going to rent Lorenzo's Oil
(I may not always be perfect but I'll always try . . .)
