Lorenzo's Oil

After watching the film, Lorenzo’s Oil, which is about Lorenzo Odone who suffered with Adrenoleukodystrophy (ALD), I visited Lorenzo’s website. He is now 29 years old and according to the site he is deprived of many functions but his mind is still there. Lorenzo’s methods of communication include blinking his eyelids to say no and wiggling his fingers to say yes, which was shown in the film. According to the site, he loves listening to music and enjoys being read to. Lorenzo’s parents started The Myelin Project that is a “multinational gathering of families struck by one demyelinating disease or another.” To help patients with demyelinating diseases treatments for remyelinating the axons have been performed in vitro and on animals, but trials on humans are in the near future. The two treatments for remyelination of axons are transplantation of myelin-forming cells and pharmaceutical compounds. God-willing in the near future these treatments will be available not only help other boys with ALD but to help others with demyelinating diseases.

This movie hit very close to home for me in a couple ways. First, it made me think of my one cousin who is a carrier of the gene for muscular dystrophy. He found out that he had an extremely mild case of the disease when he was child and was blessed that the disease never escalated to its fullest degree of severity. However, he has been warned that his children have a fifty percent chance of having a severe case of the disease. With his wedding quickly approaching and the expectation from his future wife to have a family, the worry and anticipation is at times unbearable. In relation to this movie, I could only imagine how Lorenzo’s mother must have felt when she found out that she was the carrier of the ALD gene. Even though she had no idea that she was a carrier of ALD the guilt must have still been agonizing. While my cousin knows that he is a carrier, he has to make the decision to risk having children with the disease or not have children of his own at all. I wonder what advice Michaela would have given my cousin if she was still alive.

The second thing about this film that hit me hard was the undying trust and faith the Muscatine’s had in the scientists and doctors. Since the Muscatine’s were in charge of the ALD family conferences and newsletters they were very skeptical about the information they gave out to parents. At first I was irritated with their inability to question the medical teams yet at the same time I thought about my parent’s dependency on my doctors when I was sick. The Muscatine’s, my parents, and millions of parents all over become desperate to save the lives of their children, and therefore become dependent on the knowledge of doctors and scientist’s to help them. Many people believe that doctors know everything but if they did we wouldn’t have to go from doctor to doctor for a second opinion. Even in my case my parents had to question the doctors when I was told by one neurosurgeon to wash my hair a week after my surgery, which was wrong. My parents had a bad feeling about his advice, so they decided to question my primary neurosurgeon and pediatrician to get second opinions. Both of them agreed that I had to wait 3 weeks after my surgery. I give the Odone’s a lot of credit for taking it upon themselves to not only question the doctors but to find an oil that saved the life of their son.

This film left a definite impression on me. It made me feel compelled to become more aware of other diseases like ALD and to make others aware of these diseases as well. I pray that someday remyelination treatments will be able to save the lives of those inflicted with these life-threatening diseases.