TWO Dorset brothers with a rare genetic condition are urging the government to introduce a life-saving ‘pin-prick heel’ test at birth.

Charles and Harry Fynn carry the rogue gene for adrenoleukodystrophy (ALD), which ends up destroying the myelin sheaths or protective covering for nerve endings.

Now they are urging the Health Secretary, Andrew Lansley, to consider bringing in a test for new born babies, to test for all 37 known leukodystrophies.

Charles said: “The test is vital and very simple. The early diagnosis of ALD is essential so that effective treatment can begin with the ultimate aim of preventing its devastating effects.”

Damaged myelin means sufferers lose control of their bodies and there are reckoned to be around 50,000 sufferers in the world.

The condition has been called “a cerebral timebomb,” and was once considered fatal.

Each day since they were small, the brothers have taken a dose of the only known treatment for the condition, Lorenzo’s Oil.

Lorenzo’s Oil was featured in the 1992 Hollywood film of the same name, starring Susan Sarandon, Nick Nolte and Peter Ustinov.

The Fynns were both diagnosed in the United States.

Charles said: “We were diagnosed by chance so we feel very lucky, but the test would pick this up at birth.”

The brothers, aged 26 and 23 from Ferndown, were recently appointed trustees of the global charity, the Myelin Project.

They hope to meet Mr Lansley to persuade him to support the campaign.

Harry added: “Leukodystrophy prevention can start with a pinprick and it is really as simple as that. This is something very close to our hearts and it is our ambition to see it happen.

“It’s essential that it does, because there are no real signs of the condition until it’s too late.”

Visit myelinproject.org

What is Lorenzo's oil?

Lorenzo’s Oil was discovered because the parents of young American sufferer, Lorenzo Odone refused to accept the prognosis that there was no hope for their son.

The oil, a mixture of erucic acid and oleic acid, extracted from rapeseed oil and olive oil, is preventative in that it stops the development of ALD, first diagnosed in 1981.

Augusto Odone later established the Myelin Project.

Charles and Harry feature at the end of the film in footage especially shot by their father, Lionel, at the request of the director.

In the United States, Lorenzo’s oil is currently only available to patients taking part in a clinical trial.

It has not yet been approved by the U.S. Food and Drug Administration (FDA) for marketing.

• Charles and Harry have offered to help campaigners in the US to lobby the federal government over cuts to ALD research funding.

Emily Reimer of Kansas saw a story about the brothers on the Daily Echo website.

Her eight-year-old son, Matthew also has ALD, but federal funding for research is being cut.

Mrs Reimer told the Echo: “It is very difficult for us to accept. Why can’t the government support research into a disease that kills little boys? There is plenty of funding for other conditions that do not take lives.

“We were so interested to read about the two boys who have been taking Lorenzo’s Oil for most of their life and seem to be doing very well.

“It would be great if Charles and Harry could add their voices to the campaign here.”