Sad News..

Lorenzo loses battle for life but legacy of hope lives on.

The boy who gave his name to a medicine and a Hollywood film survived for more than 20 years against the odds. But now the moving story is finally over.

His was the moving story of a boy afflicted with a rare and utterly disabling disease, whose parents would not give up in their search for a cure for him.

Yesterday it was announced by his father that Lorenzo Odone, whose condition inspired the film Lorenzo's Oil - starring Susan Sarandon and Nick Nolte - had died a few days after his 30th birthday and more than two decades after his parents were told he had two years at most to live.

His death at home in Virginia, which came after he contracted pneumonia, has brought to a close an extraordinary, inspirational tale of parents who would not give up hope and a child who refused to stop fighting for life. Lorenzo's parents, untrained in medicine, undertook their own research to produce a therapy for their son's genetic disease, adrenoleukodystrophy [ALD].

Despite the neurological condition that had immobilised all of his motor functions since childhood, his family had long insisted he was not in a vegetative state but 'trapped', and able to understand what was being told to him.

Lorenzo had been a precociously talented child before the onset of the condition. He was fluent in English, Italian and French, and his favourite stories were from Greek mythology. But the cherubic child was transformed over a few months in 1984. School reports began to express concern about his attention span. At home he suffered mood swings. He began to stumble and have speech problems. One night, when his mother was reading him a bedtime story, Lorenzo, snuggled up beside her and repeatedly begged her to speak louder.

Concerned, his parents took him to a doctor who recommended an immediate brain scan. Lorenzo was diagnosed with ALD. 'The doctors were unanimous,' Cristina has written: '"Go home, resign yourselves." Lorenzo had only a few more months to live.'

ALD is a genetic condition, affecting mainly boys, where the body produces a fatty acid that accumulates in the nerve cells and damages the coating of the nerve fibres, called myelin. A rapid loss of motor functions follows, leading usually to death within two years.
Lorenzo's disease

• Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, a membrane that surrounds nerve cells in the brain.
• Sufferers accumulate high levels of fatty acids in the brain and adrenal cortex because they do not produce the enzyme that breaks them down.
• The childhood form is the most severe, with onset between ages four and 10. The commonest symptoms are behavioural - abnormal withdrawal or aggression, poor memory, and poor school performance. Other symptoms include loss of vision, seizures, poor speech, difficulty swallowing, deafness, incoordination and progressive dementia. Death usually occurs within 1 to 10 years of onset