Page 5, 26th February 1993

26th February 1993
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Page 5, 26th February 1993 — Making miracles happen
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Organisations: World Bank, US Federal Reserve

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Making miracles happen

IN THE promotional poster for the film Lorenzo's Oil, there is a line that says "making miracles happen". It refers to the struggle of Michaela and Augusto Odone, on whom the film is based, to find a cure for their son Lorenzo's fatal disease, adrenoleukodystrophy (ALD), and their success in developing a therapy for it.

But the miracle refers not only to the Odones' extraordinary medical breakthrough but also to that rare human spirit that makes saints of men: in this case Lorenzo's extraordinary will to live and the Odones' refusal to let their son die which led them on a medical and spiritual odyssey that continues to this day.

In 1984 the Odones returned to the US from a World Bank posting in the Comoros Islands off the East coast of Africa. Lorenzo was five years old and is described by every one who knows him as a golden boy, fluent in three languages (English, French and Italian). His mother Michaela laughs when she says Lorenzo had a sense of his own marvellousness that was "quite without conceit."

When they returned to Washington DC Lorenzo seemed to have trouble adjusting at his new school, throwing temper tantrums, tripping up, and slurring his speech. After months of tests adrenoleukodystrophy (ALD) was finally diagnosed. It is a very rare, invariably fatal, genetically transmitted disease, for which there was no cure. Loss of sight, hearing, speech and ability to walk, are rapidly followed by massive neurological deterioration and death within two years.

By Christmas of 1984, Lorenzo could not move or speak and was being fed intravenously. He was deteriorating right on schedule. Meanwhile the Odones decided to educate themselves about ALD: they did not accept the conventional medical wisdom that this-was an incurable disease.

Armed -with a combined knowledge of eight years of school maths and Greek. Augusto the soft-spoken, chain-smoking economist and Michaela the vibrant and outspoken linguist undertook a crash course in biochemistry, neurology and mathematics. They read every medical journal on the topic, they talked to and badgered every expert that had ever been associated with the disease, they convened the first ever ALD symposium and they questioned and recalculated all the data available on ALD sufferers. After two years the idea for a therapy began to emerge.

ALD is known as a storage disease; it is hereditary, passed only from mother to son. It is characterised by either the lack on malfunctioning of an enzyme whereby the sufferer cannot metabolise very-long-chain saturated fatty acids or VLCFA. The build-up of acids to a toxic level destroys the myelin sheath, which is the white matter insulating the nerves. This leads to deterioration and death.

The Odones conceived the idea of an oil made up of oleic and erucic oil that normalised the production of the offending VLCFA in ALD victims. In other words the oil stops the progression of the disease. To most medical experts it almost defied belief that lay people had to come up with the solution. In honour of their son they called it Lorenzo's Oil.

Lorenzo's Oil has now been adopted by major neurological centres throughout the world, 67 boys who have the ALD gene and who are taking it

remain presymptomatic. And Lorenzo, who has been on the oil for six years, has defied all the odds and remains alive. Added to this, his quality of life has improved dramatically. Although he is bedridden and severely disabled. he can hear and see and he communicates by wiggling his fingers which means yes and by blinking which means no.

The Odones' is not a story about blind faith; there was not a moment when either believed that left to God things would work out. As Augusto says, "I am neither a crusader nor a masochist. It was a spontaneous, basic instinct to embark on this journey. Lorenzo is the engine that could and he is our inspiration." Their search for a cure was inspired by love of their son and a gradual realisation that they themselves would have to take the responsibility to cure him.

Augusto and Michaela feel that they in some way have been chosen to undertake this battle; both are honest enough to admit that if they had been given the choice they would not have had the courage to undertake it. "God had a design — if he had asked us we would not have done it and God in his infinite wisdom is very wise," says Augusto. "In some ways I think he chose us because he thought that we were going to do something about When asked about his faith Augusto's reaction is that it has been strengthened. "The net outcome of this tragic event is that it has brought me closer to God. I think of God often." In either health or in sickness Lorenzo Odone is an extraordinary boy: so much so that Michaela explained to him: "He has been chosen by Baby Jesus to lead the children in the fight against the Boo-Boo," and Michaela knows that Lorenzo understands and accepts this responsibility.

Michaela says that as a young boy Lorenzo loved to win. "I shall always win tests," the two year old Lorenzo once told his mother when she explained what they were. Now as a 14-year-old he is still taking tests. Michaela does counting and memory games with him during physical therapy exercises laughing with him when he gets it right, goading him to try again if he does not. For the Lorenzo that dazzled as a young boy still dazzles his parents in different ways. In the final analysis this is a story about a 14 year-old boy who cannot walk or talk, who lives in what some would consider the vale of darkness. And yet every day that he holds on to life he manages to communicate his joy at being alive.

With these signs of life from Lorenzo (occasionally he will reprimand one of his parents by blinking his eyes quickly) the Odones keep their faith in the struggle to hold on to him. The film Lorenzo's Oil which elegantly and expressively tells their story cannot quite capture the on-going daily struggle to keep Lorenzo alive: the mechanics of keeping a household running smoothly on a 24 hour schedule; the constant vigil to monitor Lorenzo's breathing, his body position, his oxygen intake; the revolving door of nurses that do not meet Michaela's high standards — or nurses that simply do not show up or fall sick, which means a night shift for either of them. Or Michaela's constant efforts to stimulate his mind and talk to Lorenzo when others might have tired. The film does, however, meet with the Odones approval. "George Miller has made a movie that is powerful and moving without being maudlin. The film will not be forgotten any time soon it debates issues that are current" remarks Augusto.

The Odones' fight to see Lorenzo walking and talking again continues. Lorenzo's myelin sheath was destroyed through ALD, so in 1988 the Odones founded the Myelin project. This is an international project which funds research into myelin repair. The Odones have persuaded all the top myelin repair specialists in the world to join a task force to co-operate and exchange information on experiments which the Myelin Project funds. One project-financed experiment has already shown a break-through: the spinal cord of a shaking pup born without myelin has shown areas of remyelination where the myelin-producing cells were transplanted from a healthy pup.

Thus those children with ALD and other with demyelinating diseases such as MS stand to benefit. There is a possibility of conducting the first human trials in myelin transplantation by the end of 1994. Lorenzo is at the top of the waiting list.

There is a poignant moment in the film when Augusto's character. played by Nick Nolte, asks Susan Sarandon, playing Michaela, "What if all our efforts are for somebody else's child?" Augusto answers without hesitation: "Our efforts, even if our child is not saved, will have been worthwhile." When a parent can say that, perhaps that is the real miracle.




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