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楼主 |
发表于 6.3.2006 04:58:57
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楼上说的资料我们都有 通过这次病情我们了解了很多世界上感人的事迹 对生命的意义有了全新的认识
最近有一个在德国留学的中国留学生给了我们很大的帮助 她说要给我们先寄一瓶油看看效果怎样 碰到了这位好心的学生 是孩子的福气 我们等待奇迹的发生 如果可以请在外国的同胞们把下面的资料发到一些相关的机构 请求给予帮助！如果能医好两个幼小的生命，就算下跪又算什么呢！汕尾电视台已经对这个事情进行了报道，暂时没有省级媒体来关注，希望上级媒也来关心报道。同时世界上的人也来对这个病有个认识。
我是来自中国的学生,获悉我们广东省这里有一个家庭的两个儿子得了一种病，这种病在世界上还是很罕见的，希望通过这个论坛引起世界各个地方的人对这个事情的关注，也期望医学界的专家对这个问题的关注。
I’m a university student of Chinese mainland, and recently learn that two sons of a family living in Guang Dong province both suffer from a kind of disease which is very rare worldwide. Through this forum, I’m sincerely hoped that it can arouse the worldwide attentions on this case as well as expecting the experts of medical profession to show their concerns.
二儿子得怪病 夫妻俩求救助
Sons Suffer Strange Disease, Parents Seek Help
陈佳塔的两个儿子同时患上了“肾上腺脑退白质化症”，视觉、听觉逐渐丧失，说话和行走能力也丧失。目前，医疗界上尚无有效治疗方法，据悉在台湾有一种可以控制病情的食用油，为得到这种油，陈佳塔不懈努力，苦苦寻求……
Both sons of Chen Jiata suffered the disease named ALD/AMN (Adrenoleukodystrophy) and their vision and hearing gradually lost as well as the language and action ability. So far, there is no special effective treatment which can cure the disease. But it is reported that there is a special kind of oil which can control the disease in Taiwan. In order to acquire this oil, Chen Jiata takes no spare effort to search for it …
陈佳塔生活在海城，经营一间影像工作室，原本有两个活泼可受的儿子，过着幸福美满的生活。然而好景不长，一年前，当时年仅9岁，就读小学一年级的大儿子陈立光有时会做出一些莫名其妙的举动，走路时东倒西歪，有时还会碰壁、跌倒，学习写字时双手老是不听使唤，写起字来歪歪斜斜。
Chen lives in Haifeng County and owns a small video workshop himself, leading a happy life with two lovely sons. Unluckily, one year ago, Chen’s elder son Chen Liguang who is grade one of primary school sometimes acted indescribably, including walking unsteadily, running his head against the wall or stumbling suddenly meanwhile his hands are out of control and continues shaking when writing.
由于平时工作忙，当初陈佳塔对儿子的反常举动并不太在意，开始以为是大儿子陈立光眼睛斜视，就带着他到广州中山眼科医院配了一双矫视眼镜。
Due to his busy business, Chen Jiata at the beginning didn’t notice and paid enough attention to the abnormal act of his son. He just took it for granted that it resulted from the eye strabismus. And he brought his son to Sun Yat-sen ophthalmology hospital of Guangzhou and prepared him a pair of spectacles which cure eye strabismus.
但是，陈立光跌倒摔跤的印象越来越严重。陈佳塔开始意识到问题的严重性。屋漏偏遇连夜雨，正当陈佳塔为大儿子的情况发愁时，年仅5岁的二儿子陈立文也经常会莫名其妙的狂叫，而且反应越来越迟钝，眼睛逐渐看不清东西，慢慢失去视觉功能，陈佳塔感到事情不再是想象中那么简单了，心头一紧，心想一刻也不能耽搁，就赶紧带着两个儿子到广州、深圳等地各大医院求医。
However, the phenomenon of his son’s falling down occurred more frequently and even severely. Chen Jiata began to notice the gravity of his son’s situation. Misfortune never comes alone. When Chen Jiata was worried about the illness of his elder son, his second son aged five also appeared the disease’s symptoms of screaming suddenly, reacting slowly and gradually losing his vision. Chen Tajia was aware that the severity of the illness was not as simple as he thought and can’t be delayed any longer so that he determined to bring his two sons to the famous hospitals in Guangzhou and Shenzhen.
陈佳塔没有想到厄运就这样降临在自己家里。经过各大医院医生的综合仔细诊断显示，二个儿子同时患上了世界上罕见的脑神经疾病——肾上腺脑白质退化症。医生们告诉他，这种疾病主要是母亲携带隐性基因遗传给儿子，一旦母体有此基因，所生的男孩中有一半机率会得此症。病患体内由于缺乏分解“长链饱和脂肪酸”的酵素，以致血液中脂肪过高，堆积在身体各处器官，尤其是大脑白质和肾上腺皮质，所以导致肾上腺机能与神经传导功能丧失。
Chen Jiata had never imagined that his family would be doomed to suffer this strange disease. And the diagnoses of several famous hospitals all showed that both of these two boys suffered the disease named Adrenoleukodystrophy(ALD/AMN) which is a rare cranial nerve disease in the world. The doctors told him that the disease is mainly caused by the hidden genes which are carried by their mother and pass down to their sons. In case the matrix possesses the genes, their sons will have 50% chances to suffer the disease. The patient lacks the enzyme which decomposes the Long chain saturated fatty acid so that the blood fat is too high and accumulates in the organs throughout the body, especially in the Cerebra White Matter and Adrenal Cortex, which results in the loss of Adrenal gland function and nerve conduction.
据了解，“肾上腺脑白质退化症”多数儿童在3至5岁发病，视觉听觉和知觉逐渐退化，直至各种功完全丧失，进入植物人状态，病童通常于1至10岁死亡。
It is understood that children with Adrenoleukodystrophy have a high incidence of the disease aging from three to five years old. Their vision, hearing and aesthesia will gradually degenerates until all of functions are lost and become vegetable. The patient usually dies below ten years old.
目前，世界上还没有有效的治疗方法，唯一途径是进行骨髓移植，但每个病患约需50万美元。然而这昂贵的医疗费对绝大多数人来说，都是一个天文数字。
At present, there is no special effective treatment for this disease. And the only way to cure the disease is to transplant bone marrow, which costs 500 thousand US dollars for each patient. However, the medical cost is an astronomical for the vast majority.
二个儿子同时患上“不治之症”，沉重打击着这个原本幸福的家，面对高昂的医疗费，陈佳塔一筹莫展。但他并没有因此放弃，通过多方努力，佳塔获悉了在台湾有一种可以控制病情的食用油“罗伦佐油”。
Both sons’ suffering on the incurable disease is a heavy blow to the happy family. Facing the sky-high medical cost, Chen Jiata can find no way out. But he never gives up. Through various efforts, Chen Jiata learned that there is one kind of oil named Lorenzo in Taiwan can control the disease.
黑暗中陈佳塔见到了一缕曙光，他如获至宝，只要有一丝希望，他都要尽力去争取。一年来，佳塔通过互联网向世界各家红十字会、慈善会和基金会等机构发送了无数封电子邮件，并通过市红十字会向省红十字会发送了求救信，请求省红十字向台湾红十字会联系，获取“罗伦佐油”以控制两个儿子的病情。
When Chen Jiata witnesses the slight light in the darkness, he takes it as a hope and spares no effort to strive for it. In this year, Jiata has sent innumerable E-mails to the Red Cross worldwide, various charities & funds. And he has send an urgent letter to the province Red Cross through the city Red Cross and requests the province Red Cross to contact Taiwan counterpart for the Lorenzo oil to control the disease of his sons.
目前，大儿子下身已瘫痪，二儿子已丧失了视力，而且两个儿子都丧失了说话能力，只靠服用脑活素等常用药物维持。眼看着两个儿子一步步走向死亡，陈佳塔夫妻俩泣不成声……现在夫妻俩唯一能做的只有漫长的等待求救信的回音……
At present, his elder son has been paralyzed from the waist down, while the other has lost his vision. And both of them lose the ability of language and their lives are supported only by taking the medicine called Cerebrolysin. Seeing their two sons’ approaches toward the death minute after minute, the husband and wife choke into sobs. Now what the husband and wife can do is to wait helplessly for the response letter…
主持：
一方有难八方支援，乐善好施，热心助人是我们的优良传统，我们呼吁社会各界人士尽一份心，出一份力，共同伸出救援之手搭救陈佳塔的两个儿子.
When disaster struck, help came from all sides. Charity and willingness of helping each other is our good tradition. We sincerely call upon the community to make effort to help these two sons of Chen Jiata.
电话：＋86 0660 6865798 13828960422
Tel: +86 0660 6865798 13828960422
地址：广东汕尾海丰县人民西路 （腾龙影像工作室）
Add: Renming West Road, Haifeng County, Shanwei, Guangdong province, China (Tenglong video workshop)
注解：“罗伦佐油”（Lorenzo’ s oil） 肾上腺脑退白质化症(ALD/AMN) |
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狗仔卡
发表于 4.3.2006 14:31:37
显身卡
