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May 31, 2008

Lorenzo Odone ('Lorenzo's Oil) Dies

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He passed away yesterday at his home in Fairfax County, Virginia.

Here's Martin Weil's obituary from today's Washington Post.

    Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'

    Lorenzo Odone, 30, whose story of illness, impairment and the determined effort by his parents to save his life were depicted in the 1992 movie "Lorenzo's Oil," died yesterday at his home in Fairfax County.

    His father, Augusto Odone, said that Mr. Odone apparently died of aspiration pneumonia, which can result from a foreign material inhaled into the lungs.

    Mr. Odone had been severely disabled by a genetic disease known as adrenoleukodystrophy, or ALD. The rare ailment principally afflicts males and usually results in brain failure and death.

    Augusto Odone said last night that his son had always been brave and that "everyone who knew him was crying at his death."

    He emphasized that his son's death was "not the result of the disease."

    The movie "Lorenzo's Oil" portrays the father's discovery that ALD patients could be helped by a derivative of olive and rapeseed oils.

    In an interview last night, Augusto Odone said that an article in a scientific journal asserts that if the treatment is given before symptoms develop, children can escape the effects of the disease.

    The discovery came too late for Mr. Odone, who was condemned to silence by what appeared to be the irreversible neurological effects of the disease.

    After Mr. Odone's condition was diagnosed more than 20 years ago, his parents learned that children typically lived only a few years after diagnosis. They declined to accept that fate for their son and began searching for a treatment.

    The treatment they devised came after hours of poring over obscure scientific journals and obtaining the counsel of many specialists. Although some experts said that the oil might be dangerous, the parents, noting their son's rapid deterioration, decided to take a chance. Augusto Odone credited his son's years of survival to the treatment.

    Mr. Odone's mother, Michaela, who joined her husband and nurses in providing their son with constant care, died in 2000.

    Augusto Odone said last night that he intended to have Lorenzo cremated so his ashes could be mixed with his mother's.

    In addition to Mr. Odone's father, survivors include a brother and a sister.

....................

Here's a link to the 2005 Archives of Neurology paper concluding that Lorenzo's oil is effective in preventing the effects of ALD if it is given before symptoms develop.

The Odone family was instrumental in creating The Myelin Project to advance research and education in demyelinating diseases such as ALD.

May 31, 2008 at 04:01 PM | Permalink


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Comments

holap!!!
bueno mmmm....
yo se que la historia es muy triste y pss.. que triste que se alla muerto es un gran ejemplo

Posted by: isabella swan | Oct 28, 2008 6:24:32 PM

acabo de ver la pelicula por centesima vez y me pregunte que seria de esta maravillosa familia. busque en internet y vi con muchisimo dolor que lorenzo fallecio hace tan poco y que su padre luego de que michaela partiera le hiciera escuchar la voz de su madre grabada duarante tantos años para que la sienta mas cerca. tengo dos hijos varones sanos y hermosos, y cuando los miro pienso en esa madre y ese padre, su lucha, dolor y sacrificio y me duele el alma. le pido a dios por todos ustedes, que les de paz,y la recompensa de en algun momento volver a estar todos juntos y felices otra vez.

Posted by: julieta (argentina) | Oct 16, 2008 9:58:48 AM

To the Odone family. I am so sorry for the loss of your son. The work you did towards finding a cure has helped so many people. God bless you.

John W.

Posted by: John Woods | Jul 8, 2008 10:23:35 PM

Lorenzo Michael Murphy Odone went Home to be with the Lord one day after his 30th birthday. It was a blessing. Now, he and his mother Michaela are together again. He is part Italian and part Irish. Augusto Odone is going back to his roots. So long, Lorenzo. We wish you well. God bless Lorenzo and his family.

Posted by: V.E.G. | May 31, 2008 6:44:21 PM

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