Two brothers are following in their father’s footsteps and becoming trustees of a global charity.

Charles and Harry Fynn of Bournemouth have pledged to throw themselves into fundraising for The Myelin Project and to help raise awareness of its work.

It is a cause close to their heart for a very good reason as both young men carry the rogue gene for ALD (adrenoleukodystrophy). It has been described as a “cerebral timebomb” which was once considered fatal.

That was until the parents of an American sufferer, Lorenzo Odone, refused to accept the prognosis that there was no hope for their son.

The outcome of their search for a cure was a special therapy that became known as Lorenzo’s Oil.

The story was immortalised in the Oscar-nominated film of the same name – in which Charles and Harry featured in home movie footage filmed by their father, Lionel.

The film starred Nick Nolte and Susan Sarandon as Lorenzo’s parents and Peter Ustinov as the doctor who made ALD his lifelong specialty.

Charles and Harry, who were six and two at the time, were diagnosed in the United States.

Lionel, who has been a trustee for 20 years, explained: “Charles kept getting ill and we were just not getting answers until we went to America.”

ALD is a condition that starts by wiping out the adrenal glands and ends up destroying the myelin sheaths or protective covering for nerve endings. There are reckoned to be only 50,000 sufferers in the world.

Damaged myelin means sufferers lose control of their bodies.

The oil is preventative in that it stops the development of ALD, which was first diagnosed in 1981.

Charles and Harry still take about 30ml of oil each day.

Harry said: “We are both very excited about getting involved with the charity and putting something back into an organisation which may have saved our lives.”

Charles added: “We are living examples of what the charity has achieved but there is still a lot of work to be done. We want to give as much time as we can, fundraise and do as much as possible to raise the charity’s profile.”

Both the brothers and Lionel want to see a test at birth for ALD.

“It would be a huge step forward,” said Lionel. “It would enable parents to be forewarned and prepared to protect their children.”