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'Thank God for my brother Lorenzo': A sister's story of love, hope and duty
Updated 00:15am on 2 Jun 2008
For 22 years, I had been waiting for a miracle - that my brother Lorenzo would be cured. Doctors had warned my father and stepmother that Lorenzo would not see his eighth birthday: boys with his condition rarely survived two years after their diagnosis. But Lorenzo had overcome so many setbacks that it really did seem possible that he would recover.
Last week, when, one day after his 30th birthday on May 29, Lorenzo died, I was in shock.
My whole adult life had been coloured by his presence, on a bed with a suction machine to stop him choking on his saliva, his parents and a nurse nearby in the living room of the family home.
Lorenzo Odone in later years
It was Lorenzo's story that taught me about hope, love and duty. But my brother's story also taught me about the loneliness of the visionary, the selfishness of our culture, and the arrogance that blinds many scientists.
Three years after my parents divorced, when I was 13, my father remarried Michaela, an American publisher. She was soon pregnant and Lorenzo was born on May 29, 1978.
He grew into a remarkable boy, a funny and articulate child who spoke English, Italian and French and favoured opera over nursery rhymes.
I can remember sitting on the stairs outside our house telling him the story of Sleeping Beauty for the umpteenth time. 'No, Ninna,' he would chide me, 'you forgot to hiss when you were the wicked fairy.'
But in 1984, when Lorenzo turned six, tragedy struck. As Michaela sat reading to him one day, he asked her why she was speaking softly. 'Stop whispering, Mommy,' he pleaded, 'I can't hear you.'
Michaela was worried: Lorenzo's kindergarten teachers had been concerned about his short attention span and clumsiness. She decided to have his hearing tested.
The test results were inconclusive, but the consultant, having studied Lorenzo closely, feared there was a deeper neurological problem.
What began as a routine check swiftly ushered in a dark period of blood tests, brain scans and magnetic resonance imaging scans.
The final verdict was unforgiving: Lorenzo had adreno-leukodystrophy, ALD, a rare genetic disorder carried by the mother and affecting boys aged between four and eight. Within a very short space of time Lorenzo would be unable to hear, move, see - even swallow. The next stage would be death.
Fighting spirit: Lorenzo as a boy
My father and Michaela were devastated. I remember my father's voice breaking over the telephone (the family home is in Virginia and I was working as a journalist in London), as he said: 'The doctors told us to go home and pray: there's nothing to do.'
But here is where Lorenzo's story departs from the ordinary. Neither my father nor my stepmother had had any scientific training. Yet they decided to research their son's disease.
They took turns, with my father taking unpaid leave from his job at the World Bank, to look up medical annals and scientific reviews in the National Institute of Health library, a few minutes' drive from their home.
They understood that adrenoleukodystrophy was creating fatty acids that Lorenzo's system could not break down. These acids were accumulating in the nerve cells, eroding the white coating, or myelin, that wraps nerve endings and allows the smooth transmission of messages to and from the brain.
In this way, Lorenzo's brain could not send a signal to move his arm or swallow a piece of bread.
My father and stepmother worked against the clock, watching their son deteriorate daily, hoping to find a cure.
Lorenzo's Oil
Miraculously they did. Or rather, they found Lorenzo's Oil, a mixture of oleic and erucic acids, compounds that can be extracted from olive and rapeseed oils and which can stop the production of the damaging fatty acids.
Erucic acid was regarded in America as highly toxic, and U.S. companies were reluctant to make the medicine. But Michaela discovered a company in Hull, Croda Universal, that was ready to manufacture the combination of oils to my father's specifications.
The experiment worked. The oil stopped ALD in its tracks. Tragically, it could not restore Lorenzo's sight, his impaired hearing, or his ability to walk or swallow. It was a therapy, rather than a cure. The little boy remained bedridden - trapped, as his mother put it, in a body ravaged by disease.
But there was hope: my father was convinced that if scientists could accelerate their research into diseases such as Lorenzo's, they would find a way to restore him to his old self.
Moreover, both parents proudly pointed to Lorenzo's fighting spirit that threw off every sniffle that had doctors shaking their heads woefully.
The tale of two parents who, motivated by love of their son, discovered a therapy that had eluded the medical establishment was soon taken up by the media.
In America, my father and stepmother were interviewed on TV and made the cover of People magazine; in his native Italy, my father became a national hero. To this day, I cannot show my credit card to an Italian shopkeeper without being besieged with questions about Lorenzo and praise for my father's heroic struggle.
Phil Collins wrote a song, Lorenzo, to lyrics by my stepmother. Even Hollywood came calling: George Miller, the director who went on to make Happy Feet, convinced my father and stepmother that Lorenzo's story deserved a global audience, to inspire other parents with children in similar conditions.
During the making of the film, Lorenzo's Oil, Nick Nolte shadowed my father from home to office. In particular, he told us, he wanted to capture my father's Italian accent.
The result had my father huffing crossly that Nolte made him sound like an ice cream vendor in New York's Little Italy. Meanwhile, Susan Sarandon, herself a devoted mother, punctiliously studied Michaela, becoming her friend in the process.
Friends: Michaela Odone with Susan Sarandon
The film came out in 1992. My father and Michaela were satisfied with the accuracy of its portrayal. Doctors begged to differ. Studies conducted with Lorenzo's Oil were inconclusive, they claimed, and the Odones were peddling false hopes. Most refused to prescribe the oil to their patients with ALD or other similar diseases, like MS.
Undaunted, my father and Michaela founded a charity, the Myelin Project, to promote their vision of medical research: it should be conducted not by scientists locked up in labs competing with one another for a breakthrough, but by scientists in collaboration with one another - and with the families of the afflicted.
This was revolutionary: at annual conferences held by the Myelin Project, researchers would meet parents whose sense of urgency was greater than any hope of a Nobel prize.
The men and women used to sealing themselves off among microscopes and glass vials were brought face to face with Anne, the mum of a seven-year-old with ALD, or Joe, a 25-year-old with MS.
Scientific progress is about PEOPLE
The point was brought home forcefully: scientific progress is not just about academic laurels, but about real people.
Some researchers jumped at the chance to engage with people whose lives were affected by disease; but many criticised the venture as wrong-headed. How could mere lay people keep up with scientists' discussions? Why should scientists put up with an extra level of accountability?
If my father and stepmother's attitude to medical research was unusual, their decision to keep Lorenzo at home was treated with even more suspicion.
Friends of the family, former colleagues of my father's, even relatives urged them to farm out Lorenzo to a specialist home, where he could be kept out of sight. I remember the horror on a friend's face when he learned that Lorenzo was at home.
He, who had loved the film and applauded the theory behind the Myelin Project, could not cope with the mess and self- sacrifice that illness entailed.
He was shocked when I explained that my stepmother only rarely left her son's bedside, and that my parents had given up going to the theatre, cinema and parties in order to dedicate themselves to their son. 'What kind of quality of life did they have?' he asked, uncomprehending.
I tried to explain that Michaela and my father could do no differently. Their beloved son needed them. The fact that Lorenzo was unable to fend for himself made this a moral, as well as an emotional, imperative.
My father and Michaela saw themselves not only as the loving parents of an ALD child, but as human beings with an immense respect for, and duty to, life.
In a culture where grandma is put in a home if she becomes incontinent and a disabled child is seen as a burden, this goes against the grain.
What of Lorenzo's own quality of life? Did his gentle, wide-eyed expression belie suffering, or did he bask in the love that surrounded him? It was difficult to gauge, as Lorenzo could rarely communicate - by turning his head or blinking.
But as doctors had given him only two years to live and he survived 22 more, I believe that he did want to live. This was a tribute to his parents' extraordinary care.
In order to make Lorenzo feel at the centre of the household, Michaela moved his bed into the living room. There she would read to him or play him music, while nurses worked in shifts to dress, bathe and feed him.
So that he could be assured the best round-the-clock care, Oumouri Hassane, a friend from the Comoro Islands in the Indian Ocean, where the family spent three happy years, was brought over to help nurse him.
Oumouri, now married and with three daughters, has been with us ever since.
Don't tune him out
Michaela, my father and Oumouri insisted that everyone talk to Lorenzo.
No one should try to tune out the boy lying immobile on his bed. Lorenzo's expression sometimes registered pleasure, as when his mother sang to him or Oumouri massaged his legs and feet. It sometimes also registered pain, when a seizure would have him coughing and spluttering.
When his mother died of lung cancer, in 2000, Lorenzo was aware of her absence and his wail echoed through the house.
Michaela's death robbed her of an important victory. In 2005, research published in the Archives of Neurology fully vindicated Lorenzo's Oil. A ten-year study conducted by the late Dr Hugo Moser, the world authority on ALD, showed there was a statistically lower incidence of developing ALD's symptoms in boys yet to show signs of the disease who followed a diet with the Oil.
It had taken 13 years, but finally the medical profession gave its support to the therapy.
I last saw Lorenzo two months ago. I was with my husband and daughter Isabella, four, and I thrilled at the way she spoke unselfconsciously to Lorenzo, describing her school day and favourite toys. With a child's unerring recognition of vulnerability, she held his hand tenderly, almost protectively.
My brother looked well, and as usual my father, Oumouri and I spoke of the 'what if' that haunted our lives. What if Lorenzo outlived our father? Would Oumouri and his family move into the house to continue giving Lorenzo home-care? Would Lorenzo survive a flight across the Atlantic?
In the end, Lorenzo saw to it that we stopped worrying. When my father rang to tell me that he had passed away I wept, partly in sorrow, partly in relief. I wondered what my father would do now that his great mission had ended.
Before I could ask him, he explained he was going to write a book about Lorenzo, for all the schoolchildren who through the years had sent him cards and letters. My little brother had inspired a medical breakthrough, a movie and a song, so why not a book?
'Why not?' indeed. Those two words seem a fitting motto for my father - and Lorenzo.
Reader views (26)
I saw "Lorenzo's Oil" years ago and will never forget it. It all came back to me when last week my 15 month-old nephew was diagnosed with Leukodystrophy. Doctors are still running tests to determine what type of LD he has. I am so grateful that your father, stepmother and brother never gave up against all odds. Lorenzo's story is so inspirational and give me hope. I understand that Lorenzo's Oil is a specific treatment for ALD and not necessarily for any other type of LD, but to know that there are scientists and other people in general aware of these diseases and researching treatments, makes me hopeful for my nephew. Thank you for this article and I can't wait to read your father's book. Thank you for all you do to keep this out there and keeping people aware of these devastating diseases.
- Joy Suarez, Carrollton, TX, 01/02/2012 23:01
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I thank you so much for sharing your words about the story of your brother.
I, as most of people, knew about this story thank to the movie Lorenzo's Oil.
I think you all, Odone family, are an example of patience, love, passion, courage and hope.
I also thank to The Lord for the life of Lorenzo and the life of his parents Augusto and Michaela Odone.
The works of God have been made manifest in your brother. Just like Jesus said in John 9:3.
Know that you all are not alone.
May God bless you all.
- Omar García, Coacalco, México, 10/12/2011 04:32
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i saw the movie and i now the fealing but i would say too you allt the best wishes for you famely and i wiches you and your famely all the luke for the rest of this lives and i wiches when we could be in touched you cant find mee on facebook big hughes from nadine
- laureys nadine, itegem belgium, 16/11/2010 14:02
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In memory to a Fantastic Boy.. To his mother and father...Angels...
- Maria, greece, 26/03/2010 07:51
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I have only recently seen the movie and was saddened to read that Lorenzo had passed away when researching it further. The committment and love that the Ordones had for their son was truly inspiring. Science can only go so far, but human nature reaches no bounds. God bless your family and thank you for sharing your story with us.
- Tosha Gonzalez, Morris, U.S.A., 28/12/2009 00:22
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i watched the movie in my sience class..and i loved it...yes it was sad..but it showed us that there are people who are willing to do anything to help other people out....wat they did for their son was amazing..and its even more amazing that people are still tryin to find a cure for ald!
- Tammy, Paragould Ar., 16/12/2009 01:20
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I saw the movie in 1993 and it was terrible for me to watched how this young child got that terrible disease ... but it was amazing how his parents helped him and more answers for ALD than doctors inclusive and how they were helping other people with this disease... now that Michela and Lorenzo have past away... they and your father have taught us that we have to fight for living and help people like us around the world... thank for posting this in the web and I hope you`ll find peace and love in God`s hands.
- German Castro, San Josè, Costa Rica, 12/08/2009 00:39
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Dear Mr & Mrs Odone,
I am writing to you because what you have done has truly inspired me and many others, it shows that you both are strong, faithful Christians, and you fight for what you believe you never give up when you put your heart and mind to something no matter what anyone said you still believed you could do it, and the most wonderful thing of all that you did is create a cure with children/ people with ALD ( Adrenoleukodystrophy), I think that you both are angels and your great !, Lorenzo is so lucky to have you both as parents.
I know how you both felt, you both felt stressed, petrified, pressured, guilty and responsible for what was happening to Lorenzo, especially you Mrs Michaela Odone, but you got out there and searched and searched for the correct answers.
Can I ask you what was going on in your head when the doctors disagreed with you? , How hard it was copping with Lorenzo’s severe condition? , How hard it was thinking about letting Lorenzo go? When I heard this story I discovered how much love you could have for someone, how you could be anything you want to be or do anything you want if you try and pray to the father God.
Thank you so much for inspiring me and others and finding out the cure, and helping others
Thank You,
Yours Sincerely,
Precious Mary Boakye (year 8 student)
- Precious Mary Boakye, Wimbledon, Great Britain, 13/07/2009 08:49
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I watched your film a few months ago, and I found it incredibly inspirational, moving, and beautiful. I also found it incredibly devistating, and to learn that Michaela and Lorenzo Odone have passed away was very sad. I want you to know how much this movie really meant to me.
Best Wishes
- Phoebe Pierce, Berkeley, CA, 04/06/2009 05:44
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I just saw the movie in my Management Doctoral Program. I've cried all the times. I've a child of 6 years. I am a career woman, travelling over the world and seeing your stepmother dedication, rendering me so sad and I know that my core world is my son. Uncomprehending. But that's the quality of life.
- Zawjah, Jakarta, Indonesia, 10/05/2009 06:11
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I just finished seeing the movie for the second time. This time I thought I would check out some more information on the web. I enjoyed your insight on your father and stepmother and Lorenzo. I can see that you are a fine women with a caring heart. I know that when a family member is very sick it affects the whole family you too have lived through many of the ups and downs but have come through as a shining star.
- Sheila Fitzgerald, Reykjavik, Iceland, 05/05/2009 23:59
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I also go to PVI, same story with health class. I really appreciate what your family has done, and are doing. I know that if I had ALD, I wouldn't have a chance of reaching 20 if your parents hadn't done all they did.
- Tim, Fairfax, VA, 22/04/2009 02:33
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I go to Paul VI highschool which is a couple miles away from where Mr. Augusto Odone lives at the moment. My health teachers making my class write a 4 page essay type thing on ALD and Lorenzo and your family. We watched the movie in Health and it was a good movie, but sad as hell, it messed me upinsid. I almost cried. Your parents are heros to me and every other personm in this world. I wish y'all the best.
pce
- Dom, Fairfax, VA, 20/04/2009 22:24
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I was able to watch the film, Lorenzo's Oil, in my biology class (we just finished this week), and it made me realize how important life really is. The way your dad and step mom never gave up on finding a cure for Lorenzo was amazing and it taught me that persistance and hard-work can make anything possible. Thank you for sharing your personal story, and best of luck in the future. I wish you and your family all the best.
R.I.P. Lorenzo Odone.
- Grace, Albany, California, 05/03/2009 01:24
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My biology class got to watch this movie and I cried! I thought it was really amazing how your dad and step mom found a cure for something scientists hardly even know about. I really liked this article and your story.
- Alyssa Sandry, Forest City, IA, 19/02/2009 19:23
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I watched the compelling and incredibly heroic story of Lorenzo a few months back. It inspired me to look further into it and research the Odones, and their mission. Never having been exposed to someone with ALD myself, I found it heartbreaking, yet admired the constant determination, hope and love from Lorenzo's parents. They are true heros to the human race!
- Julia, New Freedom, PA, 29/12/2008 19:34
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Omg!!!!!!!!The movie is sooo sad its not even funny. My friend (Jackie Rios) and I were watchiching the movie in Mrs. Blennaeu's biology class. We all felt his pain. Although he couldn't quietly speak we understand what he was saying. You are a wonderful person and we praise you on the struggles you over came.
- Yoselin Elorza, San Bernardino, Ca, 18/11/2008 21:15
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I use the movie to teach kids how to develop a Science Fair project. I can teach students about variables, controls, developing a thought out question based on previous research. I also use the movie to teach biology because we use terms that we never seem to apply otherwise.
It also teaches students about ethics in medicine and in life-in-general.
Lorenzo's legacy lives on through the work his parents did to find a treatment to prolong the lives of ALD Chilren.
- Ruben Nanez, Las Cruces, NM, 27/10/2008 20:24
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we watched this movie in school in order to learn the effects of ALD. im taking a medical class in my high school. We lean about all different kinds of dieases and even run tests on cells. adter watching this flim it taught me to never loose hope cus the impossible is possible. i cried watching the film. it was such a sad heroic journey your brother took and me and Lorenzo have the same birthday. its very good to know i have the same birthday as a hearo 
- Meghan, Staten Island ,New York, 19/10/2008 23:15
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Wow. We watched this movie in school just last week and I was so into it. Lorenzo was very bright, and you could tell so easily. I am so sorry about how his life went but he persevered. He was an amazing person and you must be so proud. You're parents have saved hundreds (probobly even more!) of boys around the world from this horrible disease and I find that amazing. This story has impacted my life so much. Thank you for writing this article.
- Allie, Indianapolis, IN, 30/09/2008 15:50
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I was sad to hear about your loss and yet I can easily understand why you cried of both sorrow and relief. Watching the movie for the first time a few days ago, I was impressed by the intentisy and strong belief of Michaela and your father. What an effort to fight not only their own terror of losing Lorenzo, both also the established scientists. Googling for further information I was happy to see that their theories have been confirmed and that Lorenzo's oil can help other people to get better. Thanks for sharing your story.
- Tanja, Copenhagen, Denmark, 09/09/2008 20:53
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Lorenzo's story is indeed very inspiring. How I wish to have a copy of the book about Lorenzo. Thank you for sharing with us his story. God bless to your family
- Roychelle, Taguig city, philippines, 09/09/2008 19:53
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I have seen the movie about Lorenzo today on Croatian television and this is the first time I have heard of him. The love that your family had for their son is something that cannot be described in words. I am sure that Lorenzo is in heaven now with his mother. If only there were more people in the world with that kind of love and devotion like Lorenzo's family!
- Jelena, Zagreb, Croatia., 09/09/2008 19:53
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Wow, thanks for sharing with us. I have watched the movie many times, and it was on TV (here in South Africa) again last night. I could not help myself, and watched it again. This prompted me to find more info about Lorenzo this morning.
I am sorry for your loss, and cannot begin to imagine how life has changed for your dad and you.
Blessings to you for being so positive and taking lessons from a brave life.
Estelle
- Estelle, Johannesburg, South Africa, 09/09/2008 19:53
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Thank you for your moving account of your brother's life and your family's devotion to him. Your report is an important epilogue to his life.
- Judith, USA, 09/09/2008 19:53
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After watching the movie, I too felt compelled to research on the years that have passed since the movie. After finding Wikipedia, and obituary reports...how glad I felt to find this article. Lorenzo's life and all the loved ones involved is a definite demonstration of love and devotion. I am sorry to hear of your loss. Isabella can remember the fond times with her uncle. God bless all of your family and little Isabella has an angel named Lorenzo watching over her.
- Jeannine Miller, Rockford, USA, 09/09/2008 19:53
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