Voice 1
Hello. I’m Liz Waid.
Voice 2
And I’m Elizabeth Lickiss. Welcome to Spotlight. This programme uses a special English method of broadcasting. It is easier for people to understand, no matter where in the world they live
Voice 1
Lorenzo Odone ran around the school playground. He was five [5] years old. He was having fun. Lorenzo was an intelligent and lively child. He was able to speak three languages. He knew a lot about the world for his age. He had spent three years of his life in the Comoros Islands in East Africa. Now he was living in America. His teachers enjoyed looking after him. But in December 1983, Lorenzo’s behaviour began to change.
Voice 2
His teachers said he would suddenly become angry. He was difficult to control. Lorenzo was also struggling with his schoolwork. He had stopped learning. Lorenzo’s teachers asked to see his parents - Augusto and Michaela. Augusto and Michaela took Lorenzo to the doctors. The doctors did many different tests. Lorenzo’s parents knew that something was wrong. But nothing could have prepared them for the test results. An expert doctor explained that Lorenzo had a rare disease. He called it Adrenoleukodystophy or ALD.
Voice 1
ALD is a genetic problem. It is passed from the parents to their child. The genetic problem is linked to the X sex chromosome. This means that only boys have the most severe form of ALD. ALD stops the body from breaking down large fat molecules or cells. This includes the fat cells that the body produces. And it includes fat cells from food. The build up of fat molecules slowly destroys the brain. Children become unable to walk, speak or see. Most boys with ALD die within two to three years.
Voice 2
Lorenzo’s father, Augusto remembers the doctors telling him the terrible news.
Voice 3
‘I was shocked. It was a death sentence. And Lorenzo would not even have an easy death. I asked the doctor if I could read the medical papers. But he told me not to concern myself with them. He said I would not be able to understand what they meant. He advised me to go home and look after my son. He offered no hope’.
Voice 2
Augusto and Michaela did take Lorenzo home. But they also decided to find out about ALD. They read every single book on the subject. In time they began to understand about the disease. The brain damage seemed to be linked to a build up of fatty acids in the blood. Augusto searched for a chemical that could destroy the fat. He read about a special sort of oil - oleic acid. This oil was able to destroy fatty acids. Could this be the answer to Lorenzo’s condition? Augusto knew many science experts. He had written to them during his research. Now he decided to invite them all to a conference. There he presented his research findings. But many of the experts did not believe him. He was not medically trained. He was not a doctor. Augusto and Michaela were just two normal parents who loved their son. How could they have the answer to ALD? The condition had even beaten famous scientists.
Voice 1
But in less than a year these two parents had succeeded. They had found a treatment. It was a combination of oils. The oils reduced the fatty acids in the blood. Augusto and Michaela called this oil ‘Lorenzo’s Oil’.
Voice 2
Doctor Hugo Moser is a world authority on ALD. He remembers the breakthrough:
Voice 4
‘Lorenzo’s oil lowered the fatty acids better than any other substance. It was something I knew we needed to take seriously. It would have been foolish to not investigate further’.
Voice 1
Doctor Moser decided to help Augusto and Michaela. In time other doctors also started to use the oil to treat ALD patients. A film was made about Lorenzo’s oil. People hoped it would be a miracle cure. But sadly it was not. Doctors gave children with ALD the oil. But the children still died. Lorenzo himself took the oil. He did survive - but his brain was still damaged. The oil did not help him get any better. It just slowed the progress of the disease. Many medical experts started to question the treatment. Maybe it was not a medical breakthrough after all.
Voice 2
Augusto and Michaela Odone were very sad. They had worked hard to find a cure for Lorenzo. Was all that hard work a waste of time? Augusto and his wife decided to continue to fight for their son. Doctor Moser also decided to continue with research into Lorenzo’s oil. He decided to perform more tests on boys with the ALD gene. But these boys had not developed any signs of the disease yet. Doctor Moser gave the boys Lorenzo’s oil as early as possible. Many of these children already had an older brother with the condition. Doctors had tested them for the ALD gene when they were small babies. So Doctor Moser gave them oil from a very early age. After ten [10] years Doctor Moser published his results.
Voice 1
Doctor Moser said that he gave the oil to one hundred and twenty [120] boys. All these boys had the ALD gene. Normally most them would have developed signs of the disease. Some of them would have died. But with Lorenzo’s oil eighty-three [83] of them are still healthy. Doctor Moser does not want people to think that Lorenzo’s oil is a cure. But he believes that it does help slow the progress of the disease. In some people it may prevent the disease from developing completely. But more research still needs to be carried out. One of the boys Doctor Moser treated was Glen Stafford. Glen is now over twenty years old and fully fit. He says,
Voice 4
‘If my doctor had not given me the oil at an early age I do not think I would be here now. I give thanks to those people who worked so hard to give me this chance.’
Voice 2
Doctors have continued to study and use Lorenzo’s oil. They now see its value. But what about the boy the oil was named after - what about Lorenzo? Today, Lorenzo is in his twenties. He is confined to his bed. But he is able to communicate a little. He enjoys a restricted life. His father, Augusto, continues to study ALD. He wants to find new ways to help his disabled son. He says,
Voice 1
‘When the doctors told us about Lorenzo we had to choose. We could accept Lorenzo’s death or we could fight for his life. We decided to do all we could to help our son. We did not have much knowledge of medicine. But we did have love. And today we have a result. It is not a cure for Lorenzo. But it does provide hope for other children. It also demonstrates for me the power of love.’