Lessons we can learn from Lorenzo

The following correction was printed in the Observer's For the record column, Sunday June 4 2006

Our comment piece below on the Smith brothers diagnosed with adrenoleukodystrophy (ALD), said their consultant had advised them against taking Lorenzo's oil, a mixture of oleic and erucic acids developed by Lorenzo Odone's parents. Dr Jayaprakash Gosalakkal, consultant paediatric neurologist at Leicester Royal Infirmary, who is treating the brothers, has asked us to record that he has not advised against the oil and is investigating how it might best be incorporated in their treatment.

I have been able to think of only one thing all week: those three little boys in Leicester diagnosed with adrenoleukodystrophy (ALD). I think of them, and of how they will soon lose their ability to walk, hear, talk, swallow. I think of their parents, Mr and Mrs Smith, who have been dealt the worst possible blow: to learn that not one, but all three, of your children has a rare and terrible genetic disorder. I can't get them out of my mind because back home in Washington DC, my father is looking after Lorenzo, his 28-year-old son, who, for the past 22 years, has had ALD.

Lorenzo does not move from his bed, is fed through a tube, cannot communicate. He has inspired, however, a scientific breakthrough so extraordinary, Hollywood made it the subject of a movie, Lorenzo's Oil. When their six-year-old son was diagnosed with ALD in 1984, my father and stepmother refused to accept the prognosis - death within two years. Neither had a scientific background, but they began studying every scientific book they could find.

They knew that in ALD sufferers, fatty acids found in food and processed by our bodies accumulate and begin to corrode the myelin sheath that coats the nerve cells. Once the sheath is eroded, the nervous system breaks down, as do all bodily functions.

They resolved to find a way to stop the fatty acids from accumulating. Incredibly, they did: a mixture of oleic and euricic acids, which they called Lorenzo's Oil.

Their discovery could not help their son regain his faculties, but did prevent pre-symptomatic boys from manifesting any of the horrible symptoms.

Two of the Smiths' sons are pre-symptomatic, yet the consultant they saw advised them against taking the oil.

Why? Because the story of Lorenzo's oil is not only one of parental love but of blinkered scientists. For years, that community dismissed the oil as an 'alternative' medicine, that this was a fantasy harboured by desperate parents.

When the oil was subjected to a string of clinical trials, many scientists questioned their validity. Last July, Hugo Moser, the world's expert in ALD, published a study in the Archives of Neurology which showed that of 88 pre-symptomatic boys who were given the oil, 66 stayed healthy.

Yet even this conclusive evidence could not convince the scientific community that, for once, a lay person had found the cure that had eluded them. Professional arrogance such as this proves infuriating for those at the receiving end, and it's particularly acute for the Smiths.

How very wearing

A first for BBC's Question Time last week: panellist Oona King wore a hoodie.

Sleek, striking and thoroughly cheeky, the former Labour MP for Bethnal Green and Bow caused a mild sensation by wearing the vandal's uniform on set.

'My greatest joy since losing office is being able to wear more or less what I want,' she explained to me.

'I still remember wearing a scarf round my head at a meeting in Bethnal Green and a Bengali woman spitting at me, saying, "You make me sick, wearing a scarf to get our votes!"

'All I could say was, "You keep saying that you're criticised because of the clothes you wear - and now you criticise me for mine?" These days, I don't care what people think about my wearing a hoodie: they can't vote me out.'

This week on Question Time: Patricia Hewitt in a Juicy Couture towelling track-suit and John Reid in a baseball cap.