德国开元华人社区开元周游

标题: Sons Suffer Strange Disease, Parents Seek Help [打印本页]

作者: yuanzidesign 时间: 4.3.2006 14:31
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)

作者: yuanzidesign 时间: 4.3.2006 14:34
希望在外国得同胞们帮帮我把这个帖子发到国外一些比较有影响力得网站上，外语的翻译是我请广东外语学院的同学帮忙的。过段时间我要把录像带发上来。

作者: LYWL 时间: 5.3.2006 16:08
就我所知,罗伦佐油是由一美国人叫罗伦佐发明的,罗伦佐因为自己的孩子得了这个罕见的疾病,求医无门下,自己专研医学书籍研发出这个油,这个真实故事甚至由好莱坞拍成电影,片名就叫罗伦佐的油. 这部电影我大约八或九年前看过,所以知道他的由来.如果没记错的话,是由苏珊沙兰登及尼克诺特演的.

为什么会提到台湾的罗伦佐油,是因为在台湾有个张姓家庭他们的孩子也得到了这个罕疾, 接受了罗伦佐油治疗,延缓病情恶化, 但罗伦佐油并非根治之道,目前专门研就这个罕疾的国家是美国. 在得到台湾各界的捐款下,张家得以飞往美国接受这个医疗费昂贵的治疗.但由于没有等到合适的骨髓移植,张姓家庭只好黯然返台. 对于广东的束手无策的陈家,我想他们需要有组织的协助. 人间有爱,让我们把爱付出行动吧!

下面是我在Google搜寻到有关台湾张家的新闻及有关罗伦佐的油报导其中一篇.
ALD( Adrenoleukodystrophy) 王陵寰老师提供
张明辉昨晚感动地下跪，向所有爱心捐款者说，张家这么渺小，竟在短短的几天内，得到社会如此大的关爱，他一辈子都会记得社会对他们一家人的关怀和帮助。张明辉说，一家人在人生旅程中最孤独、最绝望的时候，社会带给了他们曙光，未来他要用大家的爱心，去帮助更多需要帮助的人，希望大家的爱心让需要帮助的家庭不再孤独，他除了感激之外还是感激。在高雄市长谢长廷和多位局处首长见证下，他三个儿子医疗费的余款将捐做ＡＬＤ患者救治基金，并将由社会局长洪富峰邀请专家监督基金成立及运作。……

爱与勇气的治疗奇迹——谈电影【罗伦佐的油】
【罗伦佐的油Lorenzo's Oil】并非只是一部精彩绝伦、感人至深的电影，它记述了真实世界一则难能可贵的传奇：Michaela Odone蜜雪拉欧顿、Augusto Odone奥古斯都欧顿和Lorenzo Odon罗伦佐欧顿一家从1984年起，和ALD大脑白质硬化症奋战多年的经历，以及食疗处方罗伦佐的油Lorenzo's Oil如何被研发出来。眼见稚龄爱儿罹患罕见的遗传性疾病ALD( Adrenoleukodystrophy)大脑白质硬化症，然而医学界还没有适合的治疗方法，若不及时遏阻病情恶化，小男孩再也活不久！随时可能失去心爱孩子的焦虑苦苦煎熬，一对从未受过医学训练的父母毅然投入艰深的医学研究，决定自行研发治疗的方法来救自己的小孩！
ALD( Adrenoleukodystrophy)大脑白质硬化症在欧美的比例：平均每四万五千人中有一位ALD患者。病童刚开始会狂叫，丧失说话能力，接著瘫痪在床、丧失吞厌能力，最后死亡，历时或数个月、或数年之速。ALD大脑白质病变是一种隐性性联遗传的疾病，ALD基因在X染色体上，由母亲将ALD基因遗传给儿子，所以发病者都是男性；携带ALD基因的女性绝大多数无症状，然而也有少数ALD基因的女性成年之后会有神经系统的症状。ALD大脑白质病变的病患，一般在5-10岁时发病，通常发病后三年内病情会迅速恶化甚至死亡。

ALD( Adrenoleukodystrophy)大脑白质硬化症的病患缺乏代谢长练饱和脂肪酸
的酵素，使得体内超长链饱和脂肪酸堆积，这些超长链脂肪酸会沈积在大脑白质和
肾上腺皮质，会侵蚀脑神经系统的髓鞘质，进而妨碍神经的传导。ALD大脑白质病变的症状：行为异常、智力衰退、视力减弱、步行困难、耳聋、癫痫发作、肾上腺贺尔蒙不足、容易疲劳、呕吐、皮肤色素沉积…等等。ALD病程的最初阶段，病人会出现情绪不稳，然后病人的感觉功能和运动功能都会恶化，ALD病人会从痉挛一路退化到瘫痪。 ALD( Adrenoleukodystrophy)大脑白质硬化症的治疗：罗伦佐的油Lorenzo's Oil是目前最普遍被采用的治疗方式；罗伦佐的油Lorenzo's Oil的处方为：患者严格控制脂肪摄取，果实的皮和子也不能吃，每公斤体重给予1.7公克glycerol trioleate oil和0.3公克glycerol trierucate oil。然而罗伦佐的油Lorenzo's Oil并不能治疗已经产生的神经病变，对成年病患也不具疗效；骨髓移植仍然是ALD大脑白质硬化症目前较佳的治疗方式。

作者: yuanzidesign 时间: 6.3.2006 04:58
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)

作者: yuanzidesign 时间: 6.3.2006 05:02
下面是汕尾电视台采访的稿子

同期声：陈佳塔 Chen Jiata
这是我大儿子立光读幼儿园时都是100分的
My elder son Liguang always scored full marks when in kindergarten.
这些都是
All these are.
在学前班的时候成绩还是可以的
His performance was still satisfactory when in preschool classes.
都是90多分 100分
All were between 90 and 100 scores.
到了去年上学期成绩就开始下降，
His performance began to decline since the first semester of last year.
这些1，2，3等阿拉伯数字已经歪歪斜斜，手开始有点发抖
He can’t write the Arabic numbers such as 1, 2, and 3 ect in a correct way and his hands continued to shake.

同期声：陈立光的老师 the teacher of Chen Liguang
（陈立光）刚开始上课时老师在黑板上写字他老是跟（老师）说看不清楚
When the teacher was in class and wrote on the blackboard, he (Chen Liguang) always complained of seeing what on the blackboard unclearly.
他的家长也来（学校）反映怀疑是斜视
His parents also reflected it to the school and suspected it as strabismus.
看不清楚就叫他在笔记本上写字来看看
He was asked to write some words on notebook to check whether it was strabismus or not.
（陈立光）写字时非常吃力也非常困难字也不对格写的歪歪斜斜
When writing some words, he seemed in a hard way and can’t write normally.
后来老师叫他读课文他也读不清生字也读不清
Then the teach asked him to read the texts out, and he can’t pronounce them clearly.
表达能力非常差讲话模糊
The communication was rather poor and he couldn’t speak clearly.
同期声：陈佳塔(Chen Jiata)
应该追溯到去年的三四月份时
It should be traced back to March and April.
当时老师反映他的眼睛（有问题）其他认识他的人也在反映反映我这个大儿子眼睛看起来有点斜
At that time his teacher as well as his acquaintances reflected that there was problem with his eyes and suspected it as strabismus of his eyes.
我平常工作忙没有去注意他
And I was busy with my work and didn’t pay enough attention to him.
同期声：陈佳塔（病童父亲）Chen Jiata( patient’s father)
（配了眼镜）到一个月后陈立光的体育老师来放映说你的大儿子不会上体育课
(After wearing spectacles) one month later, Chen Liguang’s physical teacher reflected that my son was unfit for the physical education.
我一想就开始有点不放心
I began to worry about it.
当时刚好彭湃医院的医生到学校为学生体检其中一个医生对老师说这个学生的脑子可能有问题
At that time the doctors of Pengpai hospital happened to come to the school for the students’ body check and one of them told the teacher that there was problem with the brain of this student.
这个医生在体检时发现了他有点不正常
That doctor had noticed his abnormality when having body check for him.
与此同时我那个在幼儿园的二儿子的老师也反映说他的眼镜看东西有点模糊拿东西也拿不准
At the same time, the teacher of my second son who was still in kindergarten also reflected that the boy can’t see clearly though he wore a pair of glasses and had difficulty in holding something firmly.
后来我去注意他确实有问题
At that time, I surely noticed that he also had some abnormality.
当时在那一段时间我大儿子走路开始不正常了走起路来有时还会碰壁看不着那样子
During that time, my elder son began walking unsteadily and sometimes running his head against the wall as well as gradually losing his vision.
二儿子也出现了同样的情况发作不到十天的时间越来越严重
The same symptom also happened on my second son. Less than ten days, the disease got much worse.
采访：陈佳塔 Chen Jiata
我就赶紧带着他们到市医院和逸挥医院（检查）
I hurried to bring them to the city hospital and Yihui hospital for check.
在市人民医院拍了ＣＴ片结果医生初步定为肾上腺脑白质退化症
In the city people’s hospital, the doctor shot CT film for both of them. And the doctor’s early diagnosis was Adrenoleukodystrophy(ALD/AMN).

开始（医生）不敢诊断后来（那个医生）请教了他在省人民医院当教授的专家诊断的
At the beginning, the doctor wasn’t sure the diagnosis and consulted the professor of province people’s hospital.
后来我就带着两个儿子到中山大学附属第一医院
Later I brought both of my sons to the First affiliated Hospital of Zhongshan University.
那个姓徐的教授检查了以后基本与初步诊断的结果相同
After checking by professor Xu, the diagnosis still remained the same as before.
开了一些药（教授）说目前在西医上这种病还没有针对性的药物即没有有效药物
Though giving some medicines, the professor said that there was no specific drug for this disease in the field of western medicine so far.

作者: yuanzidesign 时间: 6.3.2006 08:40

--- 右击鼠标，然后保存 ---

现在把录像发上来是电视台播出过的

作者: alexmandhu 时间: 7.3.2006 17:11

QUOTE(yuanzidesign @ 06.03.2006, 08:40 )

--- 右击鼠标，然后保存 ---

现在把录像发上来是电视台播出过的
[right][snapback]918754[/snapback][/right]

您好，我已经将您的信件转发给我大学-德国维尔茨堡大学的医学院。该医学院在很多领域上都出于世界领先水平。但由于我并不是学习医学，所以不能帮到很多。我能做的就是让更多的人知道这件事情，让更多有能力的人去帮助这个孩子。

我认为大家要做的是帮忙联系各大医院，大学医学院，特别是懂医学，或者旅欧的医学系学生，去更多地告诉身边的人。

希望这孩子能吉人天相，祝他早日康复。

Alex

作者: alexmandhu 时间: 7.3.2006 17:14
我同时建议楼主更多地，积极地去联系各个大学的医学院，如果有治疗的可能性，以后再考虑申请德国的红十字基金会。

作者: yuanzidesign 时间: 11.3.2006 01:53

QUOTE(alexmandhu @ 07.03.2006, 17:11 )

谢谢你的帮助，有个在德国学医的同学也帮我把这个发到网上，请求帮助，现在家人正了解一些相关机构和筹集资金，两个孩子如果能挽救，就是在挽救一个家庭，在这里我看到了同胞的关怀，虽然回复的人不多，可是很实用。有你们的帮忙我相信会出现奇迹的。

作者: yuanzidesign 时间: 11.3.2006 01:58

[quote=alexmandhu,07.03.2006, 17:14 ]我同时建议楼主更多地，积极地去联系各个大学的医学院，如果有治疗的可能性，以后再考虑申请德国的红十字基金会。
[right][snapback]920188[/snapback][/right]

这个病最后的结果是要做骨髓移植，世界上这个成功率非常低，德国，美国应该做过这种手术，现在孩子的情况一天比一天坏，如果找到了治疗的医院，家里还是承担不起这么多的费用，德国的红十字会有这方面的帮助么？如果要申请的话，应该怎么做呢？

最近台湾的慈济基金会脐带血提供给德国的移植中心帮助一个儿童做干细胞移植成功
成为世界上首例利用脐带血对这种病（ALD)进行治疗的成功例子在医学上具有深远意义！
如果能知道怎么联系德国的移植中心还有足够的医疗费用我们可以去德国作手术前提是要有合适脐带血！

作者: yuanzidesign 时间: 11.3.2006 14:35
最近台湾的慈济基金会脐带血提供给德国的移植中心帮助一个儿童做干细胞移植成功
成为世界上首例利用脐带血对这种病（ALD)进行治疗的成功例子在医学上具有深远意义！
如果能知道怎么联系德国的移植中心还有足够的医疗费用我们可以去德国作手术前提是要有合适脐带血！

作者: beadtj 时间: 13.3.2006 08:14
好人真多。顶！

作者: yuanzidesign 时间: 13.3.2006 11:04

QUOTE(beadtj @ 13.03.2006, 08:14 )

好人真多。顶！
[right][snapback]925192[/snapback][/right]

我们需要的帮助目前是医疗费用和世界上治疗这个病的相关机构
在德国我们不熟悉家里的经济又不好如果能得到一些基金会的帮助就最好了或者德国红十字会的帮忙和一些相关机构的帮忙

最近台湾脐带血基金会提供给德国移植中心帮助一个这种病的儿童作干细胞移植，成为世界上首例对这种病的脐带血移植成功在医学上来说具有深远意义

目前在国内我们做的具体行动就是找媒体报道让社会人士帮忙筹集医疗费用
还有在一些学校的等机构筹集资金可是他们的大部分是农民兄弟虽然钱少可是有很重的心意还有佛教界也在当地给两个孩子祈祷
还有德国开元论坛上的留学生也帮忙把资料发给相关的机构请求帮助
我表哥的朋友还要帮忙在欧洲发布相关的求助信息
香港那边的同学也帮我把相关资料寄到香港的一些机构以请求帮助

如果可以
希望版主能发到一些比较有影响力的网站不单单在德国地区还有其他世界各地的华人网站美国的欧洲的请求同胞帮忙

我希望版主能联系一些相关机构例如：这个专门治疗这个疾病和成功率比较大的机构还有德国红十字会或者基金会等可以提供帮助的机构

作者: yuanzidesign 时间: 16.3.2006 16:33
广州的羊城晚报最近也对着家庭进行了报道 http://www.ycwb.com/gb/content/2006-03/15/...ent_1086983.htm

作者: kangson 时间: 17.3.2006 17:09
bless

作者: yuanzidesign 时间: 19.3.2006 14:51

QUOTE(kangson @ 17.03.2006, 17:09 )

bless
[right][snapback]928621[/snapback][/right]

谢谢你的祝福！

国内各大媒体开始关注
http://gzdaily.dayoo.com/gb/content/2006-0...ent_2445016.htm
广州日报报道
http://www.ycwb.com/gb/content/2006-03/19/...ent_1089492.htm
羊城晚报新闻追踪

作者: yuanzidesign 时间: 20.3.2006 16:25

为这个家庭做的海报！父亲母亲喜欢的色彩一分一合！

作者: yuanzidesign 时间: 24.3.2006 15:03
叫我如何忘记它，本该是春来冬去的自然规律却一次次的被打破，打破常规的人生让人震撼。肉体的折磨留下了难以磨灭的记忆，失去了人生中最大的寄托，心也不知道飘到了哪里，即将踏上北去火车的你，你的背影我能想象到，转过身时的无奈却依然要面对这个残酷的生命。再多的语言都无法诉说内心的苦闷和痛苦，只有留下一次又一次的叹息声！我知道一切过后灵魂一定能得到新生，两个人在一起走下去的就是爱，或许这就是对爱情最大的考验。无论在何时无论在何方，我都为你祝福！

作者: 蓝水晶 时间: 24.3.2006 18:13
一切都会好起来的。

作者: yuanzidesign 时间: 26.3.2006 14:15
　很多人要用一生去读解的生活哲理让这个家庭在一夜之间清醒！

作者: sophiazj 时间: 30.3.2006 05:16
本帖最后由 sophiazj 于 2.3.2020 07:35 编辑

。

作者: 陈佳塔 时间: 2.4.2006 13:54

QUOTE(sophiazj @ 30.03.2006, 12:16 )

我先生的弟弟也是这个病的患者,从第一次发病到现在已经8年了,一开始用激素治疗,后来使用瑞士雪兰诺药厂生产的BETA-1A抗干扰素针剂来控制,原来针剂的价格是3000多人民币一支,每周打一次,现在针剂价格降为800多人民币一支,目前病情严重要每天打一针,费用非常昂贵,也许它的价格过于昂贵,对两个孩子的意义不大,但是目前好象只能用这种方法才能控制病情,没有治疗方法.

我们也很关注这方面的研究进展，我的EMAIL是sophiazj@hotmail.com,如果各位有最新的治疗信息或者药物信息，也请告知我们一声，非常感谢。
[right][snapback]938734[/snapback][/right]

ALD and Lorenzo's Oil
Disease still not fully understood

The 1992 movie "Lorenzo's Oil" brought to the attention of the world a rare disorder called adrenoleukodystrophy (ALD). It is a progressive degenerative myelin disorder, meaning that myelin, the "insulation" around nerves, breaks down over time. Without myelin, nerves can't function normally, or at all. Unfortunately, the body can't grow replacement myelin, so the disorder is progressive--it gets worse over time.
What causes ALD? Who gets it?
ALD is an inherited genetic disorder linked to the X sex chromosome. Because of the way genetic inheritance works, only boys have the most severe form of ALD. The disorder leaves the body unable to break down big fat molecules, either ones the body makes itself or ones that enter the body through food. Recent research shows that this is most likely due to a carrier protein that fails to work correctly and carry the fat molecules to where they would be broken down.
The fat molecules build up and clog up cells, and hurt nerve cells in the brain and spinal cord.
Scientists now have a way of examining a woman's ALD gene to see if it's abnormal. This way, a woman who may have inherited an abnormal gene will know for certain whether or not she has it (is a carrier) and could pass it on to her children.
Do all boys with ALD die?
There are several forms that ALD can take. The most devastating type, what Lorenzo Odone has, is the childhood cerebral form, meaning that nerves in the brain are destroyed. About 35-40% of all cases of ALD are this type, which usually appears between 4 and 8 years of age in boys. These boys will become totally disabled in 6 months to 2 years, and will die sometime after.
ALD can also appear like multiple sclerosis, in that there is a gradual loss of function in the body but without the severe brain damage of the cerebral type. This second form is called adrenomyeloneuropathy (AMN), represents about 40-45% of all ALD cases, and affects men in their twenties or middle age.
Because adrenoleukodystrophy damages the adrenal glands, the disorder can begin as Addison's disease. This represents about 10% of all ALD cases, and affects males between 2 years of age and adulthood. Young men with this form usually also develop AMN by middle age. Boys diagnosed with Addison's disease are usually tested to see if ALD is at the root of the problem.
Can ALD be cured?
Unfortunately, there is as yet no complete cure for cerebral ALD. However, there are several methods being tried that seem to slow down the destruction of the disease. One method is the use of "Lorenzo's oil," made from olive and rapeseed oil, and a very low fat diet. Unfortunately, Lorenzo's oil has not proven to be as effective as first thought. Researchers are still trying to understand the complex relationships among fats in the body, and how Lorenzo's oil could be further modified to be more effective.
A second treatment, being tested experimentally, is an anticholesterol drug called Lovastatin. Researchers aren't clear exactly why this drug seems to help, but are working on understanding the processes involved.
A third method for treating cerebral ALD is bone marrow transplant. The idea is to replace cells that have a defective ALD gene with cells that have a normal ALD gene and will break down fats.
As for adrenomyeloneuropathy (AMN), no treatment has yet been developed. If an adrenal disorder like Addison's disease is present, long-term hormone replacement provides treatment.
How is Lorenzo doing? Is he still surviving?
Lorenzo Odone turned 27 years old on May 29, 2005. He is "holding his own," said his father, Augusto Odone, in an interview with The Washington Post in 2003. "He looks healthy, but he hasn't recovered any functions in a big way," he added. Lorenzo is almost totally paralyzed. Unfortunately his mother, Michaela (portrayed in the movie by Susan Sarandon), died June 10, 2000, of lung cancer.
Information for this article was taken from:
- GeneClinics (1999). X-Linked Adrenoleukodystrophy.
- Johns Hopkins Medical Institutions (Oct. 28, 1998). New test spots ALD carriers with near-perfect accuracy.
- King5.com (2000). 'Lorenzo's Oil' mother Michaela Odone dies. Reprinted from The Washington Post, June 11, 2000.

我是两个患童的父亲，感谢您们的关注！不知这个机构最近有何进展Johns Hopkins Medical Institutions 　请大家帮帮忙，我不懂英文！

作者: 陈佳塔 时间: 3.4.2006 19:13
　　　　可恨的怪病
步履维艰，言语不清，竟是长大儿。
孩子啊,辛苦了！父眼中,血泪稀。
前路漫漫,依虚梦何在？
心中悲,暗夜泣，身影飘,形走尸。
一朝父子恩,已成千古恨。

发信人：陈佳塔
现住地址：中国广东省汕尾市海丰县城人民西路
电话：0660－6865798　13828960422

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