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nrlc/news_and_views/April10/lorenzosoil.jpg

http://www.nrlc.org/news_and_views/April10/lorenzosoil.jpg. Biography Full Name:  Lorenzo Odone Born:  29th May 1978 Passed Away:  30th May 2008 Age: 30 years of age Location:  Virginia, Washington Country:  The United States Father:  Augusto Mother:  Michaela.

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  1. http://www.nrlc.org/news_and_views/April10/lorenzosoil.jpg

  2. Biography Full Name: Lorenzo Odone Born: 29th May 1978 Passed Away: 30th May 2008 Age: 30 years of age Location: Virginia, Washington Country: The United States Father: Augusto Mother: Michaela http://i.telegraph.co.uk/telegraph/multimedia/archive/01159/portal-graphics-20_1159181a.jpg

  3. http://www.jerrypettit.com/blog/wp-content/uploads/2008/05/lorenzo.jpghttp://www.jerrypettit.com/blog/wp-content/uploads/2008/05/lorenzo.jpg http://images.mirror.co.uk/upl/m3/jun2008/1/4/432AD37F-A9F8-CC33-B7069F64B2660271.jpg Lorenzo was an intelligent and happy young boy….until

  4. One day… http://boomeryearbook.com/blog/wp-content/uploads/2009/06/byb-temper-tantrum-cartoon.jpg http://www.cartoonstock.com/lowres/jfa0454l.jpg Lorenzo’s behaviour drastically changed for the worse.

  5. So, his parents took him to the doctor… They then ran various tests to find out what was wrong… http://irm.am.szczecin.pl/ludzie_priv/maciek/wordpress/wp-content/uploads/2008/07/cox.jpg http://www.saifeehospital.com/images/Facilities/46_CT_Scan.jpg

  6. They found that… http://bluefingers.files.wordpress.com/2008/03/ct-scan.jpg http://www.x-ald.nl/diagnosis.htm http://www.x-ald.nl/diagnosis.htm Lorenzo had the neurological disease Adrenoleukodystrophy (ALD).

  7. ALD http://www.nlm.nih.gov/medlineplus/ency/images/ency/fullsize/17277.jpg http://www.x-ald.nl/carrier400.jpg

  8. There is no transporter protein to transport an enzyme to breakdown long chain saturated fats therefore: Certain cells are made by the saturated fats, however without the enzyme to destroy extra fat, the excess it builds up C24 http://www.x-ald.nl/biochemistry.htm C26 http://www.x-ald.nl/biochemistry.htm Which destroys http://www.wiredtowinthemovie.com/images/hotspots/level06myelinSheath.jpg

  9. Losing myelin will eventually inhibit the brain's ability to control the body and the person eventually dies… http://www.bangitout.com/uploads/22blind-man.jpg http://4.bp.blogspot.com/_tWcMxuwF6hg/SbXKypfW4aI/AAAAAAAAAYY/h3NSy5_NVHo/s400/mute.gif http://www.google.ca/imgres?imgurl=http://www.dundee.ac.uk/disabilityservices/disability/leaflets/Image12.gif&imgrefurl=http://theheroesfestival.co.uk/information/8/Travel.htm&usg=__uSsg8h3c08yRVA bcckFvki9emHM=&h=621&w=626&sz=5&hl=en&start=7&um=1&itbs=1&tbnid=PZBSzsWTpckOBM:&tbnh=135&tbnw=136&prev=/images%3Fq%3DDisabled%26um%3D1%26hl%3Den%26tbs%3Disch:1 http://iannoon.files.wordpress.com/2010/03/deaf.jpg Lorenzo was given 2 years to live.

  10. Augusto and Michaela are saddened by the news of Lorenzo’s condition… http://www.psychologytoday.com/files/u45/sad_man.jpg

  11. In order to help Lorenzo, both Augusto and Michaela enroll Lorenzo in a clinical trial dictated by Dr. Nikolai… C24 http://www.x-ald.nl/biochemistry.htm C26 Decrease http://www.x-ald.nl/biochemistry.htm https://wiki.uwc.edu/images/a/ab/Saturated-fats-picture.jpg In

  12. Michaela finds out Lorenzo had received the disease from her… http://www.ntsad.org/images/Transmission_of_X-Linked_Traits.gif

  13. The Clinical trial is initially is not working… C24 http://www.x-ald.nl/biochemistry.htm C26 Increase of http://www.x-ald.nl/biochemistry.htm https://wiki.uwc.edu/images/a/ab/Saturated-fats-picture.jpg In

  14. Lorenzo is also enrolled into another clinical trial involving Cyclophosphides http://www.picturemosaics.com/tools/crop/display.php?n=4c0c171089317.jpg&c=your%20custom%20value http://upload.wikimedia.org/wikipedia/commons/thumb/c/cd/Cyclophosphamide_structure.svg/481px-Cyclophosphamide_structure.svg.png

  15. Doctors analyze Lorenzo after taking the Cyclophophide The Desase is still progressing however. They observed hemianopia, with transient horizontal nystagmus. The pupillary light reflexes were still intact, as yet, there was no optic atrophy. http://www.youtube.com/watch?v=Ey9NC18Jz2s&NR=1 http://www.youtube.com/watch?v=Ey9NC18Jz2s&NR=1

  16. The Odones were then contacted by Ellard Muscatine concerning the ALD foundation… In response, they head to the ALD Family Conference in July. http://www.aldfoundation.org/images/index_left.jpg http://www.youtube.com/watch?v=Ey9NC18Jz2s&NR=1

  17. At the conference, the topic of the saturated food clinical trial is brought up by Michaela… http://thejobsearchguru.com/notesfrom/wp-content/uploads/2009/02/rejected.jpg Others were experiencing the same results as the Odone’s were. http://www.youtube.com/watch?v=Ey9NC18Jz2s&feature=related

  18. In order to understand Lorenzo’s condition better… http://etc.usf.edu/clipart/19900/19900/studying_19900_lg.gif Through studying, Augusto described Lorenzo's condition through the use of a sink: Tap on the right represents very long chain saturated fats. Now, also produced by the body or manufactured by the body, are these very same fats (biosynthesis). It shouldn't be problem since an enzyme breaks down the excess, however in Lorenzo’s case the enzyme is not present. In the case of the sink, the drain is blocked. http://www.youtube.com/watch?v=X_IS2NL6R9E&NR=1

  19. While at the library, Michaela had stumbled upon an article about fatty acid manipulation http://shelfelf.files.wordpress.com/2008/01/trinity-college-library-dub.jpg In a polish study, when rats were deprived of a specific fat in their diet, body cells compensated by overproducing it.

  20. So they hypothesized that they can stop the body from producing one kind of fat: http://www.x-ald.nl/biochemistry.htm http://www.x-ald.nl/biochemistry.htm By loading it with another: http://upload.wikimedia.org/wikipedia/commons/archive/f/f3/20051022203016!Question_mark_alternate.png

  21. Reporting to Dr. Nikolai, both Augustus and Michaela wished to put together a symposium in order to exchange information. http://3pillarsofwits.files.wordpress.com/2010/02/600px-jigsaw_svg.png http://www.mahoganymasterpieces.com/Images/big_image/174_conference%20table5.jpg http://www.unc.edu/world/College_Updates_2009/world-globe.jpg

  22. However, it was difficult to actually try and achieve this tremendous feat. http://ase.org/images/lib/tips/nomoney.jpg http://blogs.discovermagazine.com/cosmicvariance/files/2008/11/time-flies-clock-10-11-2006.gif

  23. At the symposium… http://www.youtube.com/watch?v=X_IS2NL6R9E&NR=1 They discussed how the clinical trial was not working. The case study was also brought up which shed a new a light on the disease. And with the combined knowledge of researchers from all over the world…

  24. http://upload.wikimedia.org/wikipedia/commons/archive/f/f3/20051022203016!Question_mark_alternate.pnghttp://upload.wikimedia.org/wikipedia/commons/archive/f/f3/20051022203016!Question_mark_alternate.png http://1.bp.blogspot.com/_DvUbyOlnKyQ/S7IytMe8E0I/AAAAAAAAAsM/MelrpumxOTg/s1600/Caprylic+Capric+Oleic+Acids.BMP If it is in its pure form, it becomes hazardous however if it is in its triglyceride form then it is edible. http://www.shingleberrysigns.com/design_icon/warning%2015%20toxic.gif

  25. In order to have oleic acid… Extraction Of C24 • http://www.x-ald.nl/biochemistry.htm And C26 • http://www.x-ald.nl/biochemistry.htm http://www.liquid-extraction.com/images/typical-extraction.jpg From olive oil • http://1.bp.blogspot.com/_DvUbyOlnKyQ/S7IytMe8E0I/AAAAAAAAAsM/MelrpumxOTg/s1600/Caprylic+Capric+Oleic+Acids.BMP http://weblogs.cltv.com/news/local/chicago/Money%20stacks.jpg http://static.open.salon.com/files/how-olive-oil-works-31222748225.jpg

  26. The solution is there but… Companies were being stubborn http://www.sabrina.sg/files/20080901-Rejected.gif http://www.google.ca/images?um=1&hl=en&tbs=isch%3A1&sa=1&q=Telephone&aq=f&aqi=g10&aql=&oq=&gs_rfai= Also, Lorenzo’s condition worsened to a point were he needed spit suctioned out of his mouth. http://www.youtube.com/watch?v=PU_3JrjZVak&feature=related

  27. After many attempts… Protochem Laboratories http://1.bp.blogspot.com/_DvUbyOlnKyQ/S7IytMe8E0I/AAAAAAAAAsM/MelrpumxOTg/s1600/Caprylic+Capric+Oleic+Acids.BMP http://www.indiamart.com/protochem/pcat-gifs/homepage/logo.jpg And the Odone’s were sent an extra bottle. http://www.nahanniriverherbs.com/uploads/food+plants/oil_bottle.jpg

  28. Dr. Nikolai however warned the Odone’s about putting untested substances into Lorenzo.. http://webpub.allegheny.edu/dept/psych/Pictures/Ethical.jpg Is it really ethical of the Odones to put untested substances into Lorenzo? http://i243.photobucket.com/albums/ff71/death_dealer_1/Angel_of_Death.jpg http://www.bbc.co.uk/blogs/ni/GOD2.jpg

  29. ttp://media.photobucket.com/image/drawing%20blood%20for%20a%20baseline/mikeyismyfriend/drawing_blood.jpgttp://media.photobucket.com/image/drawing%20blood%20for%20a%20baseline/mikeyismyfriend/drawing_blood.jpg And then... Blood was drawn for a baseline Lorenzo was given the oleic oil through food http://blogs.kqed.org/bayareabites/files/2009/09/cooked-barracuda.jpg

  30. One month later… A small percent drop of C24 and C26 was found in Lorenzo’s blood work. http://www.istockphoto.com/file_thumbview_approve/8141806/2/istockphoto_8141806-bar-graph-decrease.jpg http://www.google.ca/images?um=1&hl=en&tbs=isch%3A1&sa=1&q=Telephone&aq=f&aqi=g10&aql=&oq=&gs_rfai= However… Not soon after the call did Lorenzo suffer from paroxysm (saliva gets caught in the trachea.) http://www.google.ca/imgres?imgurl=http://www.mdconsult.com/das/patient/body/0/0/10041/19076_en.jpg&imgrefurl=http://www.mdconsult.com/das/patient/body/0/0/10041/30160.html&usg=__OdiwFRPM7MpJEjCSWNvHOyU1Sxw=&h=320&w=400&sz=13&hl=en&start=1&sig2=NAqQDOi2vZNhSKaAqfWT7A&um=1&itbs=1&tbnid=6Spb3Kd455PzHM:&tbnh=99&tbnw=124&prev=/images%3Fq%3Dseizure%26um%3D1%26hl%3Den%26tbs%3Disch:1&ei=92sMTMaMJ4aKlwexiJyQDg

  31. The next update the Odone’s were given were... 50% drop in both C24 and C26 fatty acids. http://www.youtube.com/watch?v=PU_3JrjZVak&feature=related

  32. In order to spread the good news about the Oleic acid the Odone’s had invited the Muscatine to dinner however… They were being quite stubborn about accepting the Odone’s research. http://themoderatevoice.com/wordpress-engine/files/2009_November/stubborn.jpg http://static.open.salon.com/files/argument1227837759.jpg

  33. In February… The decrease in C24 and C26 fatty acids were barely noticeable.. http://www.youtube.com/watch?v=PU_3JrjZVak&feature=related And, as time continued, Lorenzo’s condition continually becomes worse. http://www.youtube.com/watch?v=PU_3JrjZVak&feature=related

  34. Augusto decided that he would not give up and instead, research why the oil only decreased the amount of fatty acids by 50%. http://mechanicrobotic.files.wordpress.com/2007/09/cathedral-library-kalocsa.jpg http://www.routeoneforlife.com/wp-content/uploads/2009/05/studyhard.jpg

  35. In order to explain the build up of very long fatty acid chains Augusto used a paper clip analogy http://www.youtube.com/watch?v=dLBkzlJrfLA&feature=related http://www.youtube.com/watch?v=dLBkzlJrfLA&feature=related Each paper clip equaled 2 carbon atoms.  These would connect to other carbon atoms in chains, such as C2-C4-C6.  These chains where trying to make monosaturated fats.  One chain was considered the "good guys" while the other chain was considered to be the "bad guys".  The father was the "good guy enzyme" and took a carbon and put it on his chain. Deidra however was the " bad guy enzyme" and put a carbon on her chain. This was done at the same rate. However, what confused him was why when the faster the “good guys” went, the slower the “bad guys” went, if they were both separate enzymes?

  36. However, luckily for Augustus, he fell asleep and had an epiphany from a dream… http://www.youtube.com/watch?v=dLBkzlJrfLA&feature=related The answer that had come to him was that they were both the same enzyme. http://www.youtube.com/watch?v=dLBkzlJrfLA&feature=related

  37. With this knowledge… So if they keep the enzyme busy making monounsaturated fats, it stops the enzyme from elongating the chain. This Process is known as Competitive Inhibition. http://en.wikipedia.org/wiki/File:Comp_inhib.svg It explains why oleic oil was only partly successful, since it was too low down the chain. Therefore, by adding erucic acid, it creates a second barrier and blocks the “bad guys” further up the chain. Erucic Acid http://upload.wikimedia.org/wikipedia/commons/5/54/Erucic_acid.png

  38. However… Just like the oleic acid, Dr. Nikolai was hesitant about using Erucic acid upon Lorenzo since it causes heart problems on rats. http://www.oralchelation.com/heart/images/worried.gif Erucic acid however has to have its C24 and C26 fats removed and it is difficult to have synthesized. http://home.comcast.net/~blake.flynn/paintings/timeconsuming.html

  39. Through some luck however… A British chemist known as Don Suddaby working for Croda International decided to take on the task that the Odone’s had set. http://upload.wikimedia.org/wikipedia/en/3/3f/Crodalogo.PNG http://www.youtube.com/watch?v=66OKZGeLncs&feature=related

  40. Michaela however was having continuous problem with various nurses so she decided to call an old friend of Lorenzo- Omouri. Problems http://www.youtube.com/watch?v=66OKZGeLncs&feature=related http://media.photobucket.com/image/sexy%20cartoon%20Nurse/Freefreq/Nurse/images/Nurse4.jpg

  41. One day… Mr. Suddaby had managed to synthesize the erucic acid and had it delivered to the Odone’s. http://www.youtube.com/watch?v=66OKZGeLncs&feature=related Deidra was used a test “rat” for the erucic acid. There were no harmful after effects which therefore meant it could be given to Lorenzo. http://www.boston.com/lifestyle/food/dishing/rat.jpg

  42. In September… Lorenzo’s blood sample had come back with C24 and c25 reading normal. http://www.nileclub.org/uploads/Eid_Celebration.jpg http://llenrock.com/blog/wp-content/uploads/2009/12/party.gif

  43. After Lorenzo’s success Lorenzo continued improving, even to point where he was able to swallow his own saliva. http://www.youtube.com/watch?v=uWNvZ4dEjGU&feature=related A sample was given to Wendy, and the same results were received with her child. This sparked a potential of a trial to be created. http://www.youtube.com/watch?v=uWNvZ4dEjGU&feature=related

  44. Lorenzo continually improved as time wore on… With at first being able to communicate with his eyes… http://www.youtube.com/watch?v=uWNvZ4dEjGU&feature=related and then even being able to move a finger. http://www.youtube.com/watch?v=uWNvZ4dEjGU&feature=related

  45. Meanwhile Lorenzo made it past the age of 20. He was able to move his head from side to side. He had also recovered his eyesight and had begun to vocalize simple sounds. He was learning to communicate by means of a computer. However, on May 30, 2008 (aged 30), he died from aspiration pneumonia. http://www.myelin.org/attachments/wysiwyg/1/LO%202002-hi.jpg

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