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is like eternity. During that time Lorenzo lost many of his fine motor skills. He fed himself as if he were a toddler and he needed assistance in dressing himself as well. His gait became increasingly unsteady, making it difficult for him to walk unassisted (Universal). Augusto Odone found out about the diet in May from a colleague at the World Bank where he is employed. This colleague gave him the name of Gus Nikolias, the leading expert on the family of diseases known as the leukodystrophies at the Institute of Childhood Diseases. Augusto and Michaela took Lorenzo to the institute to enter him in the diet trial. This diet restricted any types of food that contained the very long chain fatty acids C24-C26. These foods included peanut butter, pizza, and unpared fruit to name a

few. The Odones were extremely skeptical at first because they did not understand how these nutritious foods could be so harmful to Lorenzo?s brain (Universal). Dr. Nikolias explained to them that these very long chain fatty acids were accumulating in their son?s brain because of the defective enzyme causing it, in a sense, to liquefy. The Odones then enrolled Lorenzo in the study. Shortly after May 29, Lorenzo?s sixth birthday, the results from his blood test showed that despite the fact that all very long chain fatty acids C24-C26 were eliminated from his diet, the levels of these fats had increased in his blood. Discouraged, Augusto called Dr. Nikolias who told him only that the trial had to run its full course and that it was too early to interpret any of the results (Johnson

536). I feel that Dr. Nikolias statements are valid, however, during the diet study scientists should have been looking for and researching modifications to the study as well as alternative therapies. Instead they only sat and waited for the diet restriction protocol to run its full course. Diseases like Adrenoleukodystrophy require a more aggressive approach because of the simple fact that they are so destructive in such a short time. Frustrated once again, the Odones kept Lorenzo on the diet. In June of 1984, Augusto and Michaela learned about another type of therapy in Boston. After packing up their sick little boy, they traveled to Boston for the immunosuppression therapy study. This kind of therapy involved massive doses of chemotherapy administered over a period of about

three weeks. The side effects were that of any cancer patient receiving chemo treatments. These include nausea, hair loss, and weight gain or loss to name a few. At this point Lorenzo could still walk, talk and communicate, but that would all change. Believing they had no other alternative, the Odones enrolled Lorenzo in this study as well (Universal). This study turned out to be useless and brutal to the patient. The researchers were in the dark. They were blindly searching for a cure or treatment that would work to stop the progression of ALD. Shortly after the Odones returned home from Boston they received a phone call from the President of the ALD Foundation. The Foundation is a support group for the parents and families of children with Adrenoleukodystrophy. The group

provides support, raises funds for research, and holds annual meetings. In July of 1984 the Odones traveled to the ALD Foundation meeting only to find that it wasn?t what they had hoped for. The president and his spouse were satisfied with the rate of progress that medical science was making, but the Odones were not. The Foundation also refused to discuss the findings of the diet trial informally among the parents (Universal). Disappointed once again, Augusto and Michaela returned home to D.C. As September came near Augusto made a decision. He was tired of letting the doctors and scientists control what happened to his son. He did not want to be ignorant and blindly sign Lorenzo?s care over to them. From that day forward he and Michaela spent hours at the library, reading and

learning everything that they could about biochemistry, neurology, and ALD. Their goal was to understand Lorenzo?s disease so that they could react appropriately. The first obstacle was to understand why the diet was not working. Augusto made an analogy of Lorenzo?s body to a kitchen sink with a tap for what he eats and a tap for biosynthesis. The paradox was why when the eating tap was shut off did the biosynthesis tap increase (Universal). Michaela found a logical explanation for this in a polish rat study of fatty acid manipulation. This article stated that biosynthesis of C24-C26 was inhibited in lab rats by loading them up with a different fatty acid, namely C18 or Oleic acid (Universal). On November 10, 1984, at the First National ALD Symposium, scientists clarified the