Augusto and Michaela Odone
Encyclopedia
Augusto Daniel Odone 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). 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.
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". 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.
and Hans Gerhard Creutzfeldt
in 1923. 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
, 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
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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.
, 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
.
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). 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.
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". 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.
and Hans Gerhard Creutzfeldt
in 1923. 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
, 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
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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.
, 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
.
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). 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.
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". 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.
and Hans Gerhard Creutzfeldt
in 1923. 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
, 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
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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.
, 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
.
Lorenzo Odone
Lorenzo Michael Murphy Odone was an American adrenoleukodystrophy patient whose parents, Augusto and Michaela Odone, sought a treatment for the disease and invented Lorenzo's oil....
(May 29, 1978 – May 30, 2008), a child afflicted with the illness adrenoleukodystrophy
Adrenoleukodystrophy
Adrenoleukodystrophy is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies, whose chief feature is damage to myelin...
(ALD). They became famous for discovering a treatment using Lorenzo's oil
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
, for their son's "incurable" illness, and this quest was recounted in the film Lorenzo's Oil
Lorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
(1992). One of Augusto's other children is the journalist Cristina Odone
Cristina Odone
Cristina Patricia Odone is a journalist, editor, and writer living in the United Kingdom. She has written for several newspapers, and was formerly the editor of The Catholic Herald, and deputy editor of the New Statesman.- Career :...
.
In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling
University of Stirling
The University of Stirling is a campus university founded by Royal charter in 1967, on the Airthrey Estate in Stirling, Scotland.-History and campus development:...
. He continues to raise funds and drive the scientific task force known as The Myelin Project
The Myelin Project
The Myelin Project is an international scientific research organization aimed at accelerating clinical and translational research focused on myelin repair and to regenerate the nerve's myelin sheath, — a process called remyelination — destroyed in a host of diseases such as multiple...
. Michaela Odone battled cancer for some time, and finally died of lung cancer at 61.
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". 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
Acqui Terme
Acqui Terme is a city and comune of Piedmont, northern Italy, in the province of Alessandria. It is c. 35 km SSW of Alessandria...
, Italy, near his father's village of Gamalero
Gamalero
Gamalero is a comune in the Province of Alessandria in the Italian region Piedmont, located about 70 km southeast of Turin and about 13 km southwest of Alessandria....
where he lived when he was young.
Background
This severe form of adrenoleukodystrophy was first described by Ernst SiemerlingErnst Siemerling
Ernst Siemerling was a German neurologist and psychiatrist born in Müssow near Greifswald.In 1882 he obtained his medical doctorate from the University of Marburg...
and Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt was a German neuropathologist, who first described the Creutzfeldt-Jakob disease. He was born in Harburg upon Elbe and died in Munich.-Biography:...
in 1923. 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
Prognosis
Prognosis is a medical term to describe the likely outcome of an illness.When applied to large statistical populations, prognostic estimates can be very accurate: for example the statement "45% of patients with severe septic shock will die within 28 days" can be made with some confidence, because...
, 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
Hugo Moser (scientist)
Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, 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
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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 OilLorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
, in which Augusto was played by Nick Nolte
Nick Nolte
Nicholas King "Nick" Nolte is an American actor whose career has spanned over five decades, peaking in the 1990s when his commercial success made him one of the most popular celebrities of that decade.-Early life:...
and Michaela by Susan Sarandon
Susan Sarandon
Susan Sarandon is an American actress. She has worked in films and television since 1969, and won an Academy Award for Best Actress for her performance in the 1995 film Dead Man Walking. She had also been nominated for the award for four films before that and has received other recognition for her...
, 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
Phil Collins
Philip David Charles "Phil" Collins, LVO is an English singer-songwriter, drummer, pianist and actor best known as a drummer and vocalist for British progressive rock group Genesis and as a solo artist....
. Entitled "Lorenzo", it was featured on his 1996 album Dance into the Light
Dance into the Light
Dance into the Light is the sixth solo album by Phil Collins released in 1996. it was notable for being the first album that Collins released as a full-time solo artist, having left Genesis earlier that year.-History:...
.
Further reading
- Remembering Michaela, an article by Augusto Odone
- The Myelin Project
- Real-Life Sequel to Lorenzo's Oil Describes the death of Hugo MoserHugo Moser (scientist)Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, the doctor who worked with the Odones, and his later work to develop a test that would spot ALD in newborn babies.
Augusto Daniel Odone (Rome
Rome
Rome is the capital of Italy and the country's largest and most populated city and comune, with over 2.7 million residents in . The city is located in the central-western portion of the Italian Peninsula, on the Tiber River within the Lazio region of Italy.Rome's history spans two and a half...
, May 4, 1933) and Michaela Teresa Murphy Odone (January 10, 1939 – June 10, 2000) are the parents of Lorenzo Odone
Lorenzo Odone
Lorenzo Michael Murphy Odone was an American adrenoleukodystrophy patient whose parents, Augusto and Michaela Odone, sought a treatment for the disease and invented Lorenzo's oil....
(May 29, 1978 – May 30, 2008), a child afflicted with the illness adrenoleukodystrophy
Adrenoleukodystrophy
Adrenoleukodystrophy is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies, whose chief feature is damage to myelin...
(ALD). They became famous for discovering a treatment using Lorenzo's oil
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
, for their son's "incurable" illness, and this quest was recounted in the film Lorenzo's Oil
Lorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
(1992). One of Augusto's other children is the journalist Cristina Odone
Cristina Odone
Cristina Patricia Odone is a journalist, editor, and writer living in the United Kingdom. She has written for several newspapers, and was formerly the editor of The Catholic Herald, and deputy editor of the New Statesman.- Career :...
.
In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling
University of Stirling
The University of Stirling is a campus university founded by Royal charter in 1967, on the Airthrey Estate in Stirling, Scotland.-History and campus development:...
. He continues to raise funds and drive the scientific task force known as The Myelin Project
The Myelin Project
The Myelin Project is an international scientific research organization aimed at accelerating clinical and translational research focused on myelin repair and to regenerate the nerve's myelin sheath, — a process called remyelination — destroyed in a host of diseases such as multiple...
. Michaela Odone battled cancer for some time, and finally died of lung cancer at 61.
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". 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
Acqui Terme
Acqui Terme is a city and comune of Piedmont, northern Italy, in the province of Alessandria. It is c. 35 km SSW of Alessandria...
, Italy, near his father's village of Gamalero
Gamalero
Gamalero is a comune in the Province of Alessandria in the Italian region Piedmont, located about 70 km southeast of Turin and about 13 km southwest of Alessandria....
where he lived when he was young.
Background
This severe form of adrenoleukodystrophy was first described by Ernst SiemerlingErnst Siemerling
Ernst Siemerling was a German neurologist and psychiatrist born in Müssow near Greifswald.In 1882 he obtained his medical doctorate from the University of Marburg...
and Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt was a German neuropathologist, who first described the Creutzfeldt-Jakob disease. He was born in Harburg upon Elbe and died in Munich.-Biography:...
in 1923. 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
Prognosis
Prognosis is a medical term to describe the likely outcome of an illness.When applied to large statistical populations, prognostic estimates can be very accurate: for example the statement "45% of patients with severe septic shock will die within 28 days" can be made with some confidence, because...
, 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
Hugo Moser (scientist)
Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, 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
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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 OilLorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
, in which Augusto was played by Nick Nolte
Nick Nolte
Nicholas King "Nick" Nolte is an American actor whose career has spanned over five decades, peaking in the 1990s when his commercial success made him one of the most popular celebrities of that decade.-Early life:...
and Michaela by Susan Sarandon
Susan Sarandon
Susan Sarandon is an American actress. She has worked in films and television since 1969, and won an Academy Award for Best Actress for her performance in the 1995 film Dead Man Walking. She had also been nominated for the award for four films before that and has received other recognition for her...
, 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
Phil Collins
Philip David Charles "Phil" Collins, LVO is an English singer-songwriter, drummer, pianist and actor best known as a drummer and vocalist for British progressive rock group Genesis and as a solo artist....
. Entitled "Lorenzo", it was featured on his 1996 album Dance into the Light
Dance into the Light
Dance into the Light is the sixth solo album by Phil Collins released in 1996. it was notable for being the first album that Collins released as a full-time solo artist, having left Genesis earlier that year.-History:...
.
Further reading
- Remembering Michaela, an article by Augusto Odone
- The Myelin Project
- Real-Life Sequel to Lorenzo's Oil Describes the death of Hugo MoserHugo Moser (scientist)Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, the doctor who worked with the Odones, and his later work to develop a test that would spot ALD in newborn babies.
Augusto Daniel Odone (Rome
Rome
Rome is the capital of Italy and the country's largest and most populated city and comune, with over 2.7 million residents in . The city is located in the central-western portion of the Italian Peninsula, on the Tiber River within the Lazio region of Italy.Rome's history spans two and a half...
, May 4, 1933) and Michaela Teresa Murphy Odone (January 10, 1939 – June 10, 2000) are the parents of Lorenzo Odone
Lorenzo Odone
Lorenzo Michael Murphy Odone was an American adrenoleukodystrophy patient whose parents, Augusto and Michaela Odone, sought a treatment for the disease and invented Lorenzo's oil....
(May 29, 1978 – May 30, 2008), a child afflicted with the illness adrenoleukodystrophy
Adrenoleukodystrophy
Adrenoleukodystrophy is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies, whose chief feature is damage to myelin...
(ALD). They became famous for discovering a treatment using Lorenzo's oil
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
, for their son's "incurable" illness, and this quest was recounted in the film Lorenzo's Oil
Lorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
(1992). One of Augusto's other children is the journalist Cristina Odone
Cristina Odone
Cristina Patricia Odone is a journalist, editor, and writer living in the United Kingdom. She has written for several newspapers, and was formerly the editor of The Catholic Herald, and deputy editor of the New Statesman.- Career :...
.
In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling
University of Stirling
The University of Stirling is a campus university founded by Royal charter in 1967, on the Airthrey Estate in Stirling, Scotland.-History and campus development:...
. He continues to raise funds and drive the scientific task force known as The Myelin Project
The Myelin Project
The Myelin Project is an international scientific research organization aimed at accelerating clinical and translational research focused on myelin repair and to regenerate the nerve's myelin sheath, — a process called remyelination — destroyed in a host of diseases such as multiple...
. Michaela Odone battled cancer for some time, and finally died of lung cancer at 61.
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". 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
Acqui Terme
Acqui Terme is a city and comune of Piedmont, northern Italy, in the province of Alessandria. It is c. 35 km SSW of Alessandria...
, Italy, near his father's village of Gamalero
Gamalero
Gamalero is a comune in the Province of Alessandria in the Italian region Piedmont, located about 70 km southeast of Turin and about 13 km southwest of Alessandria....
where he lived when he was young.
Background
This severe form of adrenoleukodystrophy was first described by Ernst SiemerlingErnst Siemerling
Ernst Siemerling was a German neurologist and psychiatrist born in Müssow near Greifswald.In 1882 he obtained his medical doctorate from the University of Marburg...
and Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt
Hans Gerhard Creutzfeldt was a German neuropathologist, who first described the Creutzfeldt-Jakob disease. He was born in Harburg upon Elbe and died in Munich.-Biography:...
in 1923. 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
Prognosis
Prognosis is a medical term to describe the likely outcome of an illness.When applied to large statistical populations, prognostic estimates can be very accurate: for example the statement "45% of patients with severe septic shock will die within 28 days" can be made with some confidence, because...
, 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
Hugo Moser (scientist)
Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, 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
Lorenzo's oil
Lorenzo's oil is a 4:1 mixture of glycerol trioleate and glycerol trierucate , prepared from olive oil and rapeseed oil....
". Patients suffering from a related condition, adrenomyeloneuropathy, showed no clinical improvement after being treated with Lorenzo's Oil.
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 OilLorenzo's Oil
Lorenzo's Oil is a 1992 drama film directed by George Miller. It is based on a true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo's adrenoleukodystrophy...
, in which Augusto was played by Nick Nolte
Nick Nolte
Nicholas King "Nick" Nolte is an American actor whose career has spanned over five decades, peaking in the 1990s when his commercial success made him one of the most popular celebrities of that decade.-Early life:...
and Michaela by Susan Sarandon
Susan Sarandon
Susan Sarandon is an American actress. She has worked in films and television since 1969, and won an Academy Award for Best Actress for her performance in the 1995 film Dead Man Walking. She had also been nominated for the award for four films before that and has received other recognition for her...
, 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
Phil Collins
Philip David Charles "Phil" Collins, LVO is an English singer-songwriter, drummer, pianist and actor best known as a drummer and vocalist for British progressive rock group Genesis and as a solo artist....
. Entitled "Lorenzo", it was featured on his 1996 album Dance into the Light
Dance into the Light
Dance into the Light is the sixth solo album by Phil Collins released in 1996. it was notable for being the first album that Collins released as a full-time solo artist, having left Genesis earlier that year.-History:...
.
Further reading
- Remembering Michaela, an article by Augusto Odone
- The Myelin Project
- Real-Life Sequel to Lorenzo's Oil Describes the death of Hugo MoserHugo Moser (scientist)Hugo Moser, M.D. , was a research scientist and Director of the Neurogenetics Research Center at the Kennedy Krieger Institute. Dr. Moser was also University Professor of Neurology and Pediatrics at Johns Hopkins University...
, the doctor who worked with the Odones, and his later work to develop a test that would spot ALD in newborn babies.