Do you recall the film Lorenzo’s Oil, or the book on which it was based? Michaela and Augusto Odone battle the medical establishment to find an alternative treatment for their young son Lorenzo’s rare condition, ALD (adrenoleukodistrophy).
A true story, it is much more than a tear-jerker, rather a challenging tale that demands our total involvement in the moral and ethical issues it throws up. It asks us: what would we do in such circumstances? Especially, as their battle eventually bought Lorenzo many more years of life.
Lorenzo’s Oil came to mind via the heartbreaking story of Ashya King, the five-year-old with a brain tumour, allegedly abducted by his parents and taken to Spain. The story seemed clear: the boy was taken without medical consent because of the (implied) “weird” religious beliefs of his parents. To underline the suggestion of impropriety, there were dark warnings about his “deteriorating health” If he wasn’t returned to Southampton General ASAP. Police told the media on Friday that “time is running out” for the youngster as he is fed through a battery-operated feeder, and that battery would likely run out that day. This is not exactly the case.
A private dispute between a patient’s family and their doctors that had no business being plastered all over the front pages meant Ashya had suddenly, unwittingly became a cause célèbre. But modern technology gives ordinary folk a voice. Before being arrested by Spanish police, Ashya’s parents gave their side of the story via YouTube. In it they debunk much of the hysteria surrounding their actions.
Ashya’s parents damn the hospital doctors by name. They no more deserve to be publicly “shamed” here than Aysha does to be famous. However, where did suggestions re the battery-operated feeder come from, when the YouTube video shows clearly it’s powered by mains?
Hampshire police have also been criticised, but is it really their job to question medical opinion? So to Brett and Negehmeh, the parents. They were told they couldn’t have the recommendation for the Proton Beam Therapy they sought as an alternative to radiotherapy. PBT is not available on the NHS yet, but certain cases will be referred for such treatment abroad.
The whole, sorry affair revolves around whether parents have the right to search for what they believe is a better treatment. The NHS has a leaflet about how to go about seeking that treatment. The Kings were prepared to sell their house to raise funds. What would you have done?
Stefano Hatfield is the editor in chief of high50.com