'Thank God for My Brother Lorenzo': a Sister's Story of Love, Hope and Duty | Mail Online

'Thank God for my brother Lorenzo': A sister's story of love, hope and duty | Mail Online

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His parents' battle to save Site Web him inspired the film

Lorenzo's Oil. Now Lorenzo FEMAIL TODAY Just like mummy: Odone's sister writes Coleen Rooney and son Kai step out in matching parka movingly of a life that jackets The pair matched, even taught her the meaning of right down to their fluffy hope... hoods By CHRISTINA ODONE 'I thought you were Last updated at 11:15 PM on 01st June 2008 better than this... I trusted you!' Katie Comments (0) Share 0 Tweet 0 Like Waissel blasts 0 former X Factor mentor Cheryl Cole For 22 years, I had been waiting for a miracle - that my brother Lorenzo would be who chose her to cured. Doctors had warned my father and stepmother that Lorenzo would not see his make 'good TV' 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 Same-sex snogs, would recover. tattoos on fooffoos Last week, when, one day after his 30th birthday on May 29, Lorenzo died, I was in and no charm shock. whatsoever: The Valleys is vilest TV My whole adult life had been coloured by his presence, on a bed with a suction show EVER machine to stop him choking on his saliva, his parents and a nurse nearby in the living PAUL CONNOLLY said room of the family home. he was stunned Scroll down for more PICTURE EXCLUSIVE: Ooh la la: C'est Madame Posh! Victoria Beckham is 'honoured' to pose at Coco Chanel's house Makes her mark on 31 Rue Cambon!

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http://www.dailymail.co.uk/...r-writes-movingly-life-taught-meaning-hope-.html?openGraphAuthor=%2Fhome%2Fsearch.html%3Fs%3D%26authornamef%3DChristina%2BOdone[2012/10/18 0:54:12] 'Thank God for my brother Lorenzo': A sister's story of love, hope and duty | Mail Online

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Can I have this dance? Ryan Gosling whisks Rooney Mara Lorenzo Odone in later years into his arms in romantic scene for It was Lorenzo's story that taught me about hope, love and duty. But my brother's story hush-hush new film also taught me about the loneliness of the visionary, the selfishness of our culture, and Shooting the Untitled the arrogance that blinds many scientists. Terrence Malick Project

More... Sealed with a kiss: Kirsten Dunst and The boy who inspired Lorenzo's Oil dies...22 years after doctors Viggo Mortensen predicted pucker up in Greece on set of The Two Three years after my parents divorced, when I was 13, my father remarried Michaela, Faces of January an American publisher. She was soon pregnant and Lorenzo was born on May 29, Ads by Google: That must be hard work 1978. ???????????? ?TutorABC????????,? He grew into a remarkable boy, a funny and articulate child who spoke English, Italian Michelle Heaton ??? 45??,????,?????? and French and favoured opera over nursery rhymes. reveals she's going ?! to have a double www.tutorabc.com I can remember sitting on the stairs outside our house telling him the story of Sleeping mastectomy AND Beauty for the umpteenth time. 'No, Ninna,' he would chide me, 'you forgot to hiss when ??????Nexus 7 her ovaries removed you were the wicked fairy.' ?????YouTube?????! in bid to avoid ????????Nexus 7???? ? But in 1984, when Lorenzo turned six, tragedy struck. As Michaela sat reading to him getting cancer www.YouTube.com/user/M one day, he asked her why she was speaking softly. 'Stop whispering, Mommy,' he Aged just 33 pleaded, 'I can't hear you.' ????? ????????? Fresh Prince of Bel- ?????????D3?????6?? Michaela was worried: Lorenzo's kindergarten teachers had been concerned about his ? ??,??????????????! Air star Alfonso short attention span and clumsiness. She decided to have his hearing tested. www.myhealthplus.com.tw Ribeiro walks down the aisle with ??????18-48??? The test results were inconclusive, but the consultant, having studied Lorenzo closely, ????????????????? ?? feared there was a deeper neurological problem. beautiful bride ??????????????? Angela Unkrich in What began as a routine check swiftly ushered in a dark period of blood tests, brain www.hcmc.url.tw first wedding picture scans and magnetic resonance imaging scans. Played Carlton ?????????? 40??????,????????, ? 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. X Factor finalist fashioncookie.com.tw Within a very short space of time Lorenzo would be unable to hear, move, see - even Charlie tweets racy swallow. The next stage would be death. topless photo... while wearing Mr. Scroll down for more Men undies She's the tomboy singer with the angel face...

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Bet you didn't get that outfit in Mothercare! Pregnant Fearne Cotton shows she's still a rock chick in Fighting spirit: Lorenzo as a boy leather leggings and studded heels My father and Michaela were devastated. I remember my father's voice breaking over Yummy rock mummy 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.' She's gone to the dark side! Dakota But here is where Lorenzo's story departs from the ordinary. Neither my father nor my Fanning dyes stepmother had had any scientific training. Yet they decided to research their son's trademark blonde disease. locks They took turns, with my father taking unpaid leave from his job at the World Bank, to 'Well look who turned into look up medical annals and scientific reviews in the National Institute of Health library, a brunette!' a few minutes' drive from their home. He's insatiable: They understood that adrenoleukodystrophy was creating fatty acids that Lorenzo's Russell Brand seen system could not break down. These acids were accumulating in the nerve cells, taking romantic eroding the white coating, or myelin, that wraps nerve endings and allows the smooth sunset stroll with transmission of messages to and from the brain. ANOTHER beautiful In this way, Lorenzo's brain could not send a signal to move his arm or swallow a piece woman of bread. British comedian was up to his usual tricks My father and stepmother worked against the clock, watching their son deteriorate daily, hoping to find a cure. Can first date sex Lorenzo's Oil EVER lead to long- lasting love? Miraculously they did. Or rather, they found Lorenzo's Oil, a mixture of oleic and erucic MailOnline's new sex acids, compounds that can be extracted from olive and rapeseed oils and which can columnist TRACEY stop the production of the damaging fatty acids. COX gives her expert view 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 Gap forced to pull Universal, that was ready to manufacture the combination of oils to my father's T-shirt after specifications. backlash over

The experiment worked. The oil stopped ALD in its tracks. Tragically, it could not restore 'Manifest Destiny' Lorenzo's sight, his impaired hearing, or his ability to walk or swallow. It was a therapy, slogan that rather than a cure. The little boy remained bedridden - trapped, as his mother put it, in 'normalizes a body ravaged by disease. oppression' of Native Americans But there was hope: my father was convinced that if scientists could accelerate their Off the shelves research into diseases such as Lorenzo's, they would find a way to restore him to his old self. Well, you only turn Moreover, both parents proudly pointed to Lorenzo's fighting spirit that threw off every 18 once! A worse for sniffle that had doctors shaking their heads woefully. wear Amelia Lily marks milestone by The tale of two parents who, motivated by love of their son, discovered a therapy that partying til the early had eluded the medical establishment was soon taken up by the media. hours in VERY short In America, my father and stepmother were interviewed on TV and made the cover of dress People magazine; in his native Italy, my father became a national hero. To this day, I Had a drink or two cannot show my credit card to an Italian shopkeeper without being besieged with questions about Lorenzo and praise for my father's heroic struggle. Scarier than a zombie? Amy Childs Phil Collins wrote a song, Lorenzo, to lyrics by my stepmother. Even Hollywood came and Boris Johnson calling: George Miller, the director who went on to make Happy Feet, convinced my are the two most father and stepmother that Lorenzo's story deserved a global audience, to inspire other popular celebrity parents with children in similar conditions. Halloween costumes During the making of the film, Lorenzo's Oil, Nick Nolte shadowed my father from home this year to office. In particular, he told us, he wanted to capture my father's Italian accent. Don't look now

The result had my father huffing crossly that Nolte made him sound like an ice cream YSL drops 18- vendor in New York's Little Italy. Meanwhile, Susan Sarandon, herself a devoted month lawsuit mother, punctiliously studied Michaela, becoming her friend in the process. against Christian Scroll down for more Louboutin as both sides claim they won battle of the red- soled shoes Everyone is a winner!

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'I would love a girl': Giuliana Rancic reveals she is already planning for baby No2... seven weeks after birth of Friends: Michaela Odone with Susan Sarandon son Getting ready for another The film came out in 1992. My father and Michaela were satisfied with the accuracy of new arrival? 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 Buy now, cringe prescribe the oil to their patients with ALD or other similar diseases, like MS. later: Victoria, Undaunted, my father and Michaela founded a charity, the Myelin Project, to promote Shakira and Kim their vision of medical research: it should be conducted not by scientists locked up in love theirs.... but labs competing with one another for a breakthrough, but by scientists in collaboration leather trousers still with one another - and with the families of the afflicted. top the list of clothes we're TOO This was revolutionary: at annual conferences held by the Myelin Project, researchers embarrassed to own would meet parents whose sense of urgency was greater than any hope of a Nobel prize. Paddington Bear is The men and women used to sealing themselves off among microscopes and glass our new season vials were brought face to face with Anne, the mum of a seven-year-old with ALD, or style icon: The Joe, a 25-year-old with MS. Duffel coat makes a comeback Scientific progress is about PEOPLE Sales soared by almost The point was brought home forcefully: scientific progress is not just about academic 60 per cent on the high laurels, but about real people. street

Some researchers jumped at the chance to engage with people whose lives were He really is affected by disease; but many criticised the venture as wrong-headed. How could mere addicted to ink! One lay people keep up with scientists' discussions? Why should scientists put up with an Direction's Harry extra level of accountability? Styles shows off If my father and stepmother's attitude to medical research was unusual, their decision more new random to keep Lorenzo at home was treated with even more suspicion. tattoos But what can they Friends of the family, former colleagues of my father's, even relatives urged them to possibly mean? 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. Flawless Mischa He, who had loved the film and applauded the theory behind the Myelin Project, could Barton is a cover girl not cope with the mess and self- sacrifice that illness entailed. once more as she poses in stunning He was shocked when I explained that my stepmother only rarely left her son's new black and white bedside, and that my parents had given up going to the theatre, cinema and parties in shots order to dedicate themselves to their son. 'What kind of quality of life did they have?' Appearing on the front of he asked, uncomprehending. VOLT magazine I tried to explain that Michaela and my father could do no differently. Their beloved son Barefaced and needed them. The fact that Lorenzo was unable to fend for himself made this a moral, beautiful Jennifer as well as an emotional, imperative. Lopez hides her My father and Michaela saw themselves not only as the loving parents of an ALD child, weary eyes behind but as human beings with an immense respect for, and duty to, life. sunglasses... the morning after In a culture where grandma is put in a home if she becomes incontinent and a disabled partying in Paris child is seen as a burden, this goes against the grain. Kept in the shade 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 Three pages of A4, Lorenzo could rarely communicate - by turning his head or blinking. five sheets of gold leaf and 'perfect' But as doctors had given him only two years to live and he survived 22 more, I believe lemon meringues: that he did want to live. This was a tribute to his parents' extraordinary care. The show stopping In order to make Lorenzo feel at the centre of the household, Michaela moved his bed confection that saw into the living room. There she would read to him or play him music, while nurses John Whaite win worked in shifts to dress, bathe and feed him. Great British Bake Off 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, Pernickety perfect was brought over to help nurse him. piping, caramel Oumouri, now married and with three daughters, has been with us ever since. cobwebs and unfenced fondants - Don't tune him out but in the end the Michaela, my father and Oumouri insisted that everyone talk to Lorenzo. best cake won JAN MOIR applauds a fair No one should try to tune out the boy lying immobile on his bed. Lorenzo's expression result in the Bake Off 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 'Stop talking about coughing and spluttering. me to get yourself When his mother died of lung cancer, in 2000, Lorenzo was aware of her absence and press': Mark Wright his wail echoed through the house. hits out at ex Lauren Goodger as she Michaela's death robbed her of an important victory. In 2005, research published in the claims they were Archives of Neurology fully vindicated Lorenzo's Oil. A ten-year study conducted by the still seeing each late Dr Hugo Moser, the world authority on ALD, showed there was a statistically lower other incidence of developing ALD's symptoms in boys yet to show signs of the disease who Said she was 'boring' followed a diet with the Oil.

It had taken 13 years, but finally the medical profession gave its support to the therapy. Leaving Little (Mix) to the imagination! I last saw Lorenzo two months ago. I was with my husband and daughter Isabella, four, Jesy Nelson cuts a and I thrilled at the way she spoke unselfconsciously to Lorenzo, describing her school slim figure in a side- day and favourite toys. With a child's unerring recognition of vulnerability, she held his less dress while hand tenderly, almost protectively. Leigh-Anne Pinnock My brother looked well, and as usual my father, Oumouri and I spoke of the 'what if' shows off a LOT of that haunted our lives. What if Lorenzo outlived our father? Would Oumouri and his leg family move into the house to continue giving Lorenzo home-care? Would Lorenzo survive a flight across the Atlantic? 'I'm NOT the other man': Damian In the end, Lorenzo saw to it that we stopped worrying. When my father rang to tell me Whitewood denies that he had passed away I wept, partly in sorrow, partly in relief. I wondered what my he is the reason father would do now that his great mission had ended. Danielle Spencer Before I could ask him, he explained he was going to write a book about Lorenzo, for has split from all the schoolchildren who through the years had sent him cards and letters. My little Russell Crowe brother had inspired a medical breakthrough, a movie and a song, so why not a book? Strong denial

'Why not?' indeed. Those two words seem a fitting motto for my father - and Lorenzo. Well, she is a supermodel: Kate Moss still goes make-up free as she MOST READ NEWS steps out barefaced with husband Jamie Hince Wrapped up warm

Portrait of a family: Liev Schreiber and Naomi Watts pick up Boy tied to tree and BBC covered up a The internet their sons and ride burned alive on his second 'national vigilantes: around town on their eighth birthday... treasure' child Anonymous outs bicycles Just perfect!

Shannen Doherty Share this article: Ads by Google: looks a far cry from her normal glammed ???????????? up self as she steps ?TutorABC????????,???? 45??,??? out barefaced for Facebook Twitter Google+ Messenger LinkedIn ?,???????! grocery shopping www.tutorabc.com 9021-NO

Digg it Newsvine Fark Nowpublic Reddit ????? ????????? ?????????D3?????6??? ??,?????? Hollow-eyed Tara ????????! Palmer-Tomkinson Tweet 0 0 www.myhealthplus.com.tw looks like the Corpse Bride as she ARRIVES at awards Like You and 34 others like this.34 people like this. Sign Up to see bash the worse for Like what your friends like. wear It WAS a nightmare

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very restrained': Emma Watson doubts she will date a British man again Harry Potter star said they take two months just to ask her out

The Great British Bake Graph! How our love of home baking has risen and flopped each decade since the 1900s As Great British Bake Off reaches its grand finale

Fidgeting Honey Boo Boo endorses 'Marack Obama' in hilarious Jimmy Kimmel appearance Both excited and bored in nine-minute segment

Ready to go crazy? Kelly Brook shows off her saucy side as she gets ready to strip for Parisian cabaret act Crazy Horse Another string to her bow

Stern Suri Cruise looks serious as she heads to school, hand-in-hand with mother Katie Holmes No more play dates on a school night?

RICHARD KAY: Newly engaged model Poppy Delevingne abandoning her fiancé to have a crack at Hollywood Leaving James Cook behind

Cheryl Cole enjoys another dinner date with boyfriend Tre Holloway... as she reveals: 'I'm happy again' After her heartbreak Cheryl has found love

Getting her own happy ending: Downton Abbey's Joanne Froggatt weds longterm partner in private ceremony Married IT director James Cannon

Hello nobody: The

Saturdays live the dream by attending a less than glamorous party with zero A-list attendees At Hello Kitty party

Keith must be proud: Rolling Stones rocker Richards' stunning wife and daughters paint it black at fashion gala He's the only one missing!

She sure knows how to party! Rebel Rihanna's backstage antics revealed as she puffs on shisha pipe She's not exactly known for having early nights!

SPOILER ALERT: There is nothing inside the Tardis! Matt Smith shatters illusion as he rides though the open doors during Doctor Who shoot

EXCLUSIVE: Get Millie Mackintosh's Chelsea look with YouTube make-up artist phenomenon Tanya Burr Watch the ten minute exclusive video here

James Bond effect sees sales of suits soar 68% at Asda... but would Tom Ford fan 007 wear a £45 tux? Bond meet George, George at Asda

Kat in a hat: Katy Perry heads out for a shopping trip wearing a stylish big black fedora The pop singer went for a spot of shopping in Soho, New York

Mad Men's Elisabeth Moss goes back to the dark side as she loses peroxide blonde look Rinsing the show right out of her hair

Stony-faced Tanya Jones arrives in LA... as another picture

emerges of husband Vinnie Jones arm-in- arm with a Russian blonde

Legs eleven: Jennifer Lopez shows off her toned figure in tiny dress to celebrate sister's Parisian birthday party Took a break from her world tour

Today's headlines Most Read

First Look: MIC star Louise Thompson models debut clothing range and reveals all about life with 'bachelor' Spencer Matthews ‘The heroin chic look isn’t my cup of tea’: Plus-size model Robyn Lawley slams the size-obsessed fashion industry REVEALED: Lana del Rey poses in sultry images for H&M fashion campaign 'I was worried. I was in total mother mode': New mom Alessandra Ambrosio's race to get in shape to model Victoria's Secret's $2.5m Fantasy Bra Is this the best ever response to a Facebook rant? Bodyform 'boss' enlightens confused boyfriend about periods in witty spoof video Bride discovers she has cancer on her WEDDING DAY - and she had thought the tumour was a baby on the way

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http://www.dailymail.co.uk/...r-writes-movingly-life-taught-meaning-hope-.html?openGraphAuthor=%2Fhome%2Fsearch.html%3Fs%3D%26authornamef%3DChristina%2BOdone[2012/10/18 0:54:12]