2007-04-12 | 血管瘤病娃专递
鱼粉常乐俩口子，翻译了患血管瘤的小宝贝她姑姑的求助信3封，里面有些小宝贝的信息，特公布于下。并诚征个人时间富裕的在海外生活或国内生活但英语相当过关、可以随意阅读的网友，来一起帮助这个可怜又可爱的小孩子——主要工作是把小孩的相关求助信息贴到海外大医疗网站或影响力巨大的论坛。
有朋友提示，让翻译成多种语言，但某顺本人就不掌握外语，在此事上时刻求人，也很麻烦。只能寄希望于大家的共同参与。英语毕竟是通用些，就先招募一个英语通来做信息的发布工作吧。下面是网友来信，请病娃家长也先宽心——大家还没忘了你家的事和你家的娃，都在想办法，都在努力中。
网友来信：
你好！这是一封求救信，为的是我同学的侄女。
这个孩子现在七个月大了，颈部得了很严重的血管瘤，来北京之后去了很多大医院,都
不愿意接受这孩子，说是没救了。所以我同学一家现在基本上是听天由命。听我同学说
这些的时候，我觉得特别揪心了，看了这孩子的照片，我的眼泪都快下来了。实在太惨
了。可以想象，我同学一家人现在有多伤心。所以，我想到了顺顺姐姐你，想到你的热
心和善良，于是给你写了这封求救信，希望能通过你，找一找拯救这个孩子的方法。我
和我同学一家人在此先致以深深的谢意！
下面是我同学提供的孩子病情介绍：
这孩子出生时左耳后就有红点，后来诊断是血管瘤，当时哈尔滨市的医院说孩子太小、
再等等，后来就严重了，现在没有医院接受她手术了。首先瘤子太大，而且是混合型，
手术可能止不住血，孩子的生命可能会中止在手术台上。现在严重得脖子下边长了三个
小红豆大的淋巴瘤，情况很糟糕。我同学一家人只能保守治疗，可效果甚微。孩子的病
情愈发恶化，日夜啼哭，痛苦不堪。
希望顺顺姐姐能把这帖子公布出来，看看有没有好心人能帮着想想办法，找找治疗手
段。不管是不是有效果，尽力而为吧。我帮我同学以及她的家人先致以深深的谢意！
PS:顺顺，血管瘤和淋巴瘤（2个大写的英文词）我是从电子词典单个词查的，但不确定
是不是正确的医学名词,请咨询医生核实。
Dear Shunshun,
Hello! This is a letter for helping my classmate’s niece.
Her daughter is 7 months old, and in her neck she has a very serious BLOOD VESSEL TUMOR. After they went to Beijing, they visited many big hospitals, but none of them wanted to receive her because all doctors thought nothing will save this little girl. So my classmate and her family lost all hope. When I heard this from her, I felt really sorry, and when I saw the photos of her child, I was in tears. It’s really miserable. It’s easy to understand the pain and sorrow they fell now. Then I thought about you, with your kind and warm heart. I wrote you this letter hoping you may help this little poor girl to find the way which can save her life. Many thanks! No matter what the results are, we thank you for your efforts.
Here’s some background information of the child’s disease:
When she was born, there were already some red spots found on her skin behind her left ear. The doctor said it’s a “blood vessel tumor” but at the hospitals of Harbin they said the child was too young to operate. However it was getting worse very soon. At this moment, no hospitals will receive her and operate her because her tumor is too big and too complicated. If she gets an operation, it’s really difficult to control the bleeding, and she might lose her life right on the operation table. Now the situation is getting worse and worse, 3 LYMPH GLAND TUMORS as big as coffee bean are growing in her neck. They can only treat her in the conservative way now, but it’s not working well at all. The little girl is in terrible pain and crying every day and night.
I hope you will show this letter on your blog and see if some people have any ideas how to treat her. Doesn’t matter what happens, we must try what we can do. On behalf of my classmate and her family, I thank you!
Best regards!
第二封信原文及翻译：
顺顺姐，
我跟同学一样称呼您，希望还合适。感谢您的帮助，今天我把消息告诉我妈妈、爸爸、哥哥和嫂子，他们很高兴。让我一定要谢谢您。因为您的帮助，网上有很多人关心我的侄女，也有人提供一些办法，虽然目前还没有实质的好办法。但是，如果孩子知道有这么多人在关心她，她也会感谢大家的，她非常聪明，尽管7个月，但记忆力特别好，可以说爸爸、妈妈和姑姑（bubu）。
这个孩子26天时就确诊是血管瘤，当时我们去哈市（我家是黑龙江的），哈市的儿童医院说手术有可能会面瘫或下肢瘫痪，后去哈市211医院，那里大夫说“没事，长多大，都能治”，于是就用同位素伏贴。当时我们都以为是小病、就听了，211的大夫说等2个半月再来。结果孩子的瘤长得特别快，再去找那大夫，人家就不管了，人也不出现了。
后来我哥嫂把黑龙江好的医院都跑遍了，包括哈医大二院。医生说手术下不来手术台，还不如让她多活两天。。他们又跑了牡丹江几个医院，都不接收。年前来北京，去过儿童医院，301，不行，前两天又来北京中日友好医院，院长说无能为力。孩子已精疲力尽，每天哭，所以刚回家修养。基本情况是这样。
很感谢您的帮助，希望在大家的帮助下，我的侄女可以康复。
再次谢谢您！
Dear Shunshun,
Thanks for helping. Today I told my family about this, they are so happy with it. Because of your help, many people from everywhere through internet are blessing my niece, and some people offered several ideas( although they are not useable). If the child would know so many people care about her, she would thank them too. She is very wise even she is just 7 months old, she can already speak: papa, mama and gugu (aunt).
This girl was certainly diagnosed with a BLOOD VESSEL TUMOR when she was 26 days old. At that time we went to Harbin(since we are from HeiLongJiang province), the doctor of the Harbin Children’s Hospital said, if they give her the operation, she could get facial paralysis or leg paralysis or even both, so we didn’t do it. Then we went to No.211 Hospital of Harbin, and the doctor there said,“it’s ok, whenever you want to treat it, it will be no problem.” So we just gave her some medicine which that doctor offered. We all thought it was not a big deal in the beginning, so we rather trusted what that doctor said to us. He told us to wait two and half months and then bring her to this hospital again. But the BLOOD VESSEL TUMOR was growing extremely fast which is not what we expected. When we came back at the hospital, that doctor didn’t say anything and do anything anymore about it, and very soon he was disappeared. After that, my brother and his wife visited all good hospitals in HeiLongJiang province with their daughter. All doctors said, to save her life, don’t operate on her. They also tried some other hospitals in MuDanJiang city, but none of them would receive her. For they don’t want give up, they came to Beijing before Chinese New Year, Visited Beijing Children’s Hospital and Beijing No.301 Hospital but without success. They tried the China/Japan friendship Hospital some days ago, but the director of the hospital said they can do nothing. As the poor girl has lost all her energy and she is crying all the day, so they had to bring her back home to let her rest.
Thanks for your help. I hope my niece will get well from all people’s help.
Best regards
第三封信是病娃家的联络方式：
地址：黑龙江省双鸭山市集贤县291农场 银都小卖店
电话：13204696291（孩子祖父）
孩子祖父：孙宝库 孩子父亲：孙明瑞 患病孩子：孙玉佳
联络信箱：sunxiaojing291@sohu.com 孙晓静（孩子的姑姑）
Our contact address: Yin Du Shop, 291 farm, Ji Xian county ,Shuang Ya City,Hei Long Jiang Province,China
Our mobile number: +86-13204696291 Contact person: Mr. Sun (grandpa of the girl)
Our email address: sunxiaojing291@sohu.com (aunt of the girl)
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下面是一些相关医疗网站：
http://www.chinaneurosurgery.net/net/wz.htm
https://www.cancercenter.com/contact-us/chat.cfm?i=1058
https://secure.opi.upmc.edu/cirs/questionForm.cfm
http://www.cancer.org/asp/messageBoards/msg_global.asp?navToScreen=msg_0_5&s
itearea=
http://www.cancercare.org/about_us/contact_us/
http://www.candlelighters.org
http://www.leukemia-lymphoma.org/all_faq.adp?item_id=9454
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另外，此求助在某顺博客登出后，有不少网友要求公布捐款账号，想为小孩子赞助一点治疗费。大家的好意，某顺及孩子家人都心领了，但此求助不同于一般求助，病孩至今在国内找不到敢接纳她住院积极治疗的医院，而不是缺少医疗费才不能就医。某顺很钦佩孩子家人的志气，所以才一定要帮他们一把，争取找到能治该病的医院，哪怕在海外。
也希望个别怀疑一切的网友不要口不择言，乱说一气，下面一条跟帖是孩子姑姑跟的，大家可以了解病人家属的心思——PS:与某顺而言，帮助病娃和集中问答，是一样的重要，所以请个别人嘴下留情，不要时刻显摆你的优越，你是没遇到事儿，你遇到了，一样匿名向某顺咨询。某顺的集中问答里，有1/3以上的咨询者是高学历高收入高生活水准的“白骨精”，未见得她们都比你傻都比你差吧？所以请刻薄的人少发议论，因为某顺看不顺眼的跟帖（疑似侮辱当事人的），都会积极删除，你白搞的可能性很大。
**** 在上文中提到：
互帮互助太好了，只是不要有坏人骗姐姐上当，毁姐姐英明哟
虽然我很生气但是我理解您，因为现在骗人的实在太多了，她是和我有血缘关系的婴儿，您也会如此想吗，我们没有为了要别人的钱，我父亲说如果不够我们会借，我们只希望有医生和医院能治好她，所以希望您不要多想
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