The girl who lives in the dark

 
还记得去年,我看了一部日剧, 【太阳之歌】。 在戏里, 有一个女病患, 她得了很罕见的著色性乾皮症Xeroderma Pigmentosum,簡稱XP),身體不能照射陽光。要是身体照到阳光,病患就有可能得到皮肤癌。这也会大大简短病患的寿命。
 
昨晚由于饿到慌了,就起来喝奶。也顺便扭开了电视机。在Discovery Channel看到这个纪录片,“The girl who lives in the dark”。就是描述一个XP的病患。
 
转载,
 
" A documentary about a 9-year-old girl from China, Wao Lao Yang, who suffers from Xeroderma Pigmentosum, a rare genetic disorder which makes her skin unable to repair itself after exposure to U.V. light.
 

As soon as U.V. hits Wan Lao, her skin reacts dangerously, making it impossible to go outside, or even watch TV. This film documents Wan Lao’s journey to Shanghai, and the treatment she receives from a specialist from the famous Great Ormornd Street Hospital. It also explores the work of NASA’s Sun Protection Team which has created a customised ‘sun suit’ for Wan Lao that blocks out 100% of U.V. rays.

Wao Lao had little choice but to leave school two years ago. She was distracted by the weeping sores on her face and the other students were troubled by the sight and unpleasant smell caused by the bacteria surrounding the tumors on her face. The only remedy she had access to in her small village were natural herbs, which her uncle placed over her face regularly.

The debilitating disease makes it impossible for Wao Lao to go outside, or even watch TV. When U.V. penetrates Wao Lao, her skin reacts dangerously. She has developed deadly tumors which have covered her left eye. Throughout the film the tumors becomes increasingly worse when medical help arrives to help her and her family.

This film documents Wan Lao’s journey to Shanghai, and the treatment she receives from a specialist from the famous Great Ormornd Street Hospital. It also explores the work of NASA’s Sun Protection Team which has created a customized ‘sunsuit’ for Wan Lao that blocks out 100% of U.V. rays.

Advanced surgical techniques and cutting-edge technology combine to transform the life of this extraordinary little girl. On return to her village, she is kept under safeguard by UV filtered windows in the home and also in the classroom where she returns, to learn along side her peers.

Sadly, the damage was so severe she lost a large part of her face. Wao Lao’s courage of survival is remarkable and she no longer lives in isolation in her village."

Wan Lao 是一个非常勇敢的女孩。她为了有一个更好的前途,可以和别的小孩一起上学和玩,她愿意客服任何的手术。甚至医生说要是手术失败,她会马上死去,她也愿意。她也希望可以结婚。

 
英国的医生,用自己的年假,花了两天的时间,从上海到Wan Lao的村子拜访她和评估了她的情况。发现情况不妙,医生建议她去上海看医生。但由于家里平困,没有经济能力去给她看医生。那英国医生通过关系,在上海最好的儿科医院,免费让她接受治疗。可是情况是想象中的还要严重。因为Wan Lao在长时间接触太阳,她的皮肤癌已经毁掉她的鼻子和左眼。医生建议Wan Lao马上动手术。但是一个很高风险的手术。要是手术失败,她可能会马上失去生命。即使手术成功,她也会毁容。但Wan Lao的意志力很强。为了有一个更好的生活,她愿意接受挑战。
 
Wan Lao必须接受两个大手术。医生把肿瘤切除,然后还要从腿部切一块肉来补她脸上的一个大洞。过了两个月,Wan Lao出院了。村子里的人都很欢迎她回来。Wan Lao也可以去上学了。村子好特地把课室的窗口加了一层的防UV的塑料。虽然Wan Lao需要穿着防UV的衣服去上学,可是她很开心。因为她的心愿就是能去学校读书。就是希望她未来的生活会更好。同学也比较能接受她。记得有一幕,Wan Lao比较迟离开学校,但她的朋友却在校外等她。Wan Lao很开心的谢谢了他们。
 
可是好景不长在。其实Wan Lao的癌细胞已经扩散到身体了。Wan Lao在2005年七月逝世。虽然从出院到死亡,是那么短, 其实只是少过一年,但她没有后悔。至少在那最后的那几个月,她活得很开心。她能去学校,和别的孩子玩。那几个月,Wan Lao对生命有了希望。
 
虽然Wan Lao只有九岁,但她的病使她知道生命的可贵。即使只有一线希望,她也要去尝试。她非常的勇敢。她的勇气我相信是很难在别的小孩甚至在一个成年人找到。
 
 

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