Title: The Real Lesson From Lorenzo's Oil
Category: Child Care
Last year we were blessed with an inspiring movie called Lorenzo's Oil. It was a story of a very gifted and bright young boy who developed a brain disease and rapidly regressed. He went from being a normal child with gifted intelligence to being almost a vegetable in a matter of months. His disease, adrenoleukodystrophy is one of many demyelinating diseases we see in patients. It is usually caused by a rare enzyme deficiency which allows too much of a certain fatty acid or chemical to build up and damage the myelin covering of the brain. Once the myelin breaks down the electric impulses, thoughts and physical movements of the body deteriorate. In it's worse case the disease progresses to a patient who is unable to eat or swallow and is kept alive only by extreme supportive measures. In most cases, children with demyelinating diseases die within a matter of months or rarely years.
In the movie, Lorenzo's Oil, the parents at first refused to see anything wrong with their child. Finally, they admit he is regressing rapidly and they come to grips with his rare diagnosis. They seek out the best specialist they can find to study and treat his disease and they refuse to give up and accept the dismal prognosis which is basically "no hope of a cure".
The father in the movie played by Nick Nolte is a highly intelligent engineer who digs into the medical and chemistry books and works with other scientists around the world to come up with a concoction he calls "Lorenzo's oil". Lorenzo's oil is a mixture of erucic acid added to oleic acid which when fed to Lorenzo helps him to reverse some of his regression. The story is very moving and the courage of the parents is inspiring. Unfortunately the case is not true and is based on the hope of such a cure. In actuality, Lorenzo's oil or erucic acid added to oleic acid has been studied in many patients with adrenoleukodystrophy but has not been shown to reverse their neurologic damage. The theory is that by the time the neurologic changes have occurred it is probably too late to reverse them. Case studies were reported recently in the New England Journal of Medicine on many patients with the same disease as Lorenzo and their treatment with a concoction similar to Lorenzo's oil. Actually their serum levels of the bad fatty acids did decrease as in the movie but their neurologic damage did not reverse.
Despite the discouraging nature of this report, I think there is still a lot to learn from the movie, Lorenzo's Oil and the report in the New England Journal of Medicine. I believe there is hope for this dread disease and many other curable diseases we see today through evolving treatments such as gene therapy, bone marrow transplantation and synthetic chemical mixtures such as Lorenzo's oil, particularly when fed early in a patient's case. What other encouragement can we take from this movie? I think the number one message is that facing any chronic disease is much easier if a couple pulls together with the help of their extended family and friends. I certainly have seen this in my practice many times and never cease to be inspired by the courage and love shown by so many of my patients. I have seen parents go from being extremely shy and passive to being active, enthusiastic, and even aggressive advocates for their child and the disease there child has. I believe I have seen literal miracles occur through the outpouring of love and faith these parents and families give to their children. Certainly many of the children who should have died in weeks and months went on to live for years through that courageous love and remarkable home care. So, never lose hope, no matter what disease you may face. Always pull together with good help and support from all your medical care givers, your family, and most especially, our Heavenly Father. Miracles like that seen in Lorenzo's Oil do occur every day in our world. Through our God-given knowledge and scientific progress I think we will see many more in years to come.