When news happens text pix and video to 80360. Start your message with BE then leave a space.
Brothers pay respects to Lorenzo’s Oil creator who helped save their lives
TWO brothers flew to America for a memorial service for a man who helped save their lives.
Augusto Odone – whose story was told in the Hollywood film Lorenzo’s Oil, died in October and a special service to commemorate his life was held in Baltimore last week.
The film was based on the true-life story of Lorenzo Odone, whose father Augusto’s search for something that could help his son’s genetic disorder adrenoleukodystrophy (ALD) led to the development of a dietary supplement.
The oil destroys the long-chain fatty acids that ALD sufferers cannot metabolise, but has to be given from early on to be effective.
Charles, 28, and 24-year-old Harry Fynn, of Ferndown carry the rogue gene for (ALD), which ends up destroying the myelin sheaths or protective covering for nerve endings.
They have been taking Lorenzo’s Oil since they were children, having been diagnosed in the United States.
Charles said: “We went to give thanks to somebody who’s had such a major impact on our lives.
“Lorenzo’s Oil is something we’ve been taking since we were very little.
“It was what our parents were looking for when we were first diagnosed.”
And Harry added: “His determination may have saved our lives and those of many other boys around the world. The least we could do was to come to his memorial service.”
The brothers are trustees of the global charity, the Myelin Project which champions research into ALD.
The memorial service was held in the Kennedy Krieger Institute in Baltimore.
The boys also attended the opening of a new research institute at the John Hopkins University.
Comments are closed on this article.