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Angle's Tears

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鲜花(2) 鸡蛋(0)
发表于 2012-6-22 06:23 | 显示全部楼层 |阅读模式
老杨团队,追求完美;客户至上,服务到位!
I haven't googled the word - lissencephaly for a while; a random search lately deeply touched my heart since I am a mother with a daughter diagnosed with Lissencephaly.
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Megan Ham, 11-Year-Old With Rare Brain Disorder, Perks Up Only To Justin Bieber Songs, Will Meet Him, / [% ?7 h/ Y5 G' g
http://www.ibtimes.com/articles/ ... phaly-vancouver.htm$ ?8 Q7 I+ r# Z0 a

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' ~+ [0 Y" W* Q0 L0 O) X. yOne gives me so much hope, 11 years old - I wish my daughter can live beyond this miracle number.
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The other deeply saddened me and truly wish that little girl well!
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Everyone has a definition of happiness. Just a reminder for every parent, always be grateful for every moment you hold your child. Life has too many unexpected and your children are the most precious!. U4 n: m: X5 j2 M. e" r
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鲜花(0) 鸡蛋(0)
发表于 2012-6-22 12:13 | 显示全部楼层
My heart goes out for you and your daughter!
理袁律师事务所
鲜花(10) 鸡蛋(0)
发表于 2012-6-22 14:17 | 显示全部楼层
祝福 ~
鲜花(2) 鸡蛋(0)
 楼主| 发表于 2012-6-23 04:33 | 显示全部楼层
老杨团队 追求完美
Thanks! 0 Q9 {& c& W. E; d% Y  `/ H" Z
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Medical science always has new discoveries, hope remains even it takes 30 to 50 years, at least one will benefit in the future. 7 d! z9 a- {1 u/ p; Z
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Lorenzo's Oil is my favorite! If a parent gets discouraged, this is a good movie to view.  ( M9 I! q* ?- B. w2 ~' Y' F
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Lorenzo's Oil Summary and Critique from The Neurobiology BIO413 Blog" A) A/ P7 V4 m4 `7 T6 v
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Lorenzo's Oil is the heart-warming and inspiring account of a young boy named Lorenzo Odone who was diagnosed with the terrible disease adrenoleukodystrophy (ADL). ADL is a disease (linked to the X- chromosome) that inhibits the break down of long-chained, saturated fats in the bloodstream. This, in turn, would cause the corrosion of the myelin sheaths and lead to brain damage.
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The movie starts by depicting when the young boy and his family lived in Africa for three years. After their return to the states, it shows how Lorenzo's behavior turned erratic and violent (starting at school and then entering the home) plus how many doctors said there was no explanation for his behavior. After his parents took him to a neurologist, he was diagnosed with ADL and his parents were told that he had no more than three years to live. The doctor's claimed there wasn't a cure and there was no hope. The Odones were not satisfied with this information so they searched out anyone who knew anything about this disease. Their search brought them to Dr. Nikolais who was the top ADL research scientist at the time. He was testing an experimental diet program for ADL patients where the foods eaten would reduce the levels of saturated fat in their blood. Lorenzo's levels did not improve on this diet and his parents went in search of new methods for helping their r son despite the scrutiny from the ADL support group and Dr. Nikolais. To make a long story short, the Odones found out (through research and trial & error) adding purified erucic acid and oleic acid to Lorenzo's diet significantly reduced the amount long, saturated fats in his blood and brought the levels back down to normal. After a continuation of the newly revised treatment, Lorenzo's abilities started to come back but they are still very limited. The movie ended with hope because it seems as if Lorenzo could make a full recovery one day.
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; c2 Y% S% T$ q  H0 a. jThe movie, in my opinion, was excellent and it added to my belief that there is a God and he can do anything. It astonished me that people who had no background, degrees, nor experience in medicine/ biology/ neuroscience, they went to the library constantly found out answers which helped to save their son's life when men with PhD’s could not find anything. Despite all the negative feedback they were getting, they kept fighting. It was very inspiring to see that one person can make a difference for the better. Never think that you are too insignificant to contribute to anything. The mother's drive for answers and her undying love for her son were so powerful and beautiful. The movie proved to me that knowledge is power and is not limited to anyone. It is there for anyone to grasp.
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