Augusto and Michaela Odone

Augusto Daniel Odone (Rome, May 4, 1933) and Michaela Teresa Murphy Odone (January 10, 1939 – June 10, 2000) are the parents of Lorenzo Odone (May 29, 1978 – May 30, 2008), a child afflicted with the illness adrenoleukodystrophy (ALD). They became famous for discovering a treatment using Lorenzo's oil, for their son's "incurable" illness, and this quest was recounted in the film Lorenzo's Oil (1992).^[1] One of Augusto's other children is the journalist Cristina Odone.

In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling. He continues to raise funds and drive the scientific task force known as The Myelin Project. Michaela Odone battled cancer for some time, and finally died of lung cancer at 61.^[2]

Lorenzo died the day after his 30th birthday. He was almost totally paralyzed but was, according to his father Augusto, "holding his own". He couldn't see, speak, or move on his own. He communicated by wiggling his fingers and blinking his eyes. His mind was intact and he enjoyed music and having people read to him. "Certainly, he has good days and bad days, he is bedridden and he cannot eat more than through a tube… but his mind is still there. He likes that we read to him, that we play music for him and he knows who is around him".^[3] He lived with his father in Virginia and was cared for by nurses and his family friend, Oumouri Hassane. In the summer of 2010 Augusto Odone moved to Acqui Terme, Italy, near his father's village of Gamalero where he lived when he was young.

Background

This severe form of adrenoleukodystrophy was first described by Ernst Siemerling and Hans Gerhard Creutzfeldt in 1923.^[4] Lorenzo was diagnosed in 1984, using a new blood test that had been recently developed. People with the disease were usually young boys (5–10 years old), who would gradually become mute, deaf, blind and paralysed before dying, which typically happened within two years due to aspiration or neurological causes.

Augusto and Michaela refused to accept this grim prognosis, and fought to find a treatment for their son's fatal disease, clashing time after time with doctors, specialists, and support groups, some of whom were skeptical that two average citizens could produce a cure. With the help of Hugo Moser,^[5] and through long hours of research and study, the Odones, who had had no previous medical background, came up with a treatment. This treatment involved the consumption of a specially prepared oil, which became known as "Lorenzo's oil".^[6] Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.^[7]

The Odones had an important role both in developing Lorenzo's oil and in setting up the Myelin Project, which promotes and carries out research on ALD and other similar disorders. Michaela also insisted on continuing to treat her incapacitated son as a human being and not a "vegetable", helping him devise a means of communicating with her and others through the blinking of his eyes and the wiggling of his fingers.

Cultural depictions

The Odone's story was made into the 1992 film Lorenzo's Oil, in which Augusto was played by Nick Nolte and Michaela by Susan Sarandon, who through her involvement with the movie, became the spokesperson of the Myelin Project.

A poem Michaela wrote about Lorenzo was set to music by Phil Collins. Entitled "Lorenzo", it was featured on his 1996 album Dance into the Light.^[8]

References

1. ^ "Lorenzo Odone Subject of Lorenzo's Oil, the film portraying his parents' quest to cure his degenerative disease". The Telegraph. 01 Jun 2008. http://www.telegraph.co.uk/news/obituaries/2062622/Obituary-Lorenzo-Odone.html. Retrieved 14 June 2010. 
2. ^ "Michaela Odone, 61, the 'Lorenzo's Oil' Mother Dies" by Wolfgang Saxon, June 13, 2000, The New York Times.
3. ^ New Scientist
4. ^ Siemerling E, Creutzfeldt HG (1923). "Bronzekrankheit und sklerosierende Encephalomyelitis". Arch. Psychiat. Neurokrankh. 68 (1): 217–44. doi:10.1007/BF01835678. 
5. ^ "Hugo Moser". The Guardian. 2007-92-21. http://www.guardian.co.uk/news/2007/feb/21/guardianobituaries.obituaries. Retrieved June 7, 2009. "In truth, Hugo, who diagnosed Lorenzo back in 1984 as suffering with ALD, was too intellectually curious to dismiss Lorenzo's oil simply because it was the finding of two lay people" 
6. ^ Odone A, Odone M (June 1994). "More on Lorenzo's oil". The New England Journal of Medicine 330 (26): 1904–5. doi:10.1056/NEJM199406303302615. PMID 8196741. 
7. ^ Aubourg P, Adamsbaum C, Lavallard-Rousseau MC, Rocchiccioli F, Cartier N, Jambaqué I, Jakobezak C, Lemaitre A, Boureau F, Wolf C (September 1993). "A two-year trial of oleic and erucic acids ("Lorenzo's oil") as treatment for adrenomyeloneuropathy". The New England Journal of Medicine 329 (11): 745–52. doi:10.1056/NEJM199309093291101. PMID 8350883. http://content.nejm.org/cgi/pmidlookup?view=short&pmid=8350883&promo=ONFLNS19. 
8. ^ Billboard on PC

Further reading

• Remembering Michaela, an article by Augusto Odone
• The Myelin Project
• Real-Life Sequel to Lorenzo's Oil Describes the death of Hugo Moser, the doctor who worked with the Odones, and his later work to develop a test that would spot ALD in newborn babies.