北京新阳光慈善基金会于2009年在北京市民政局注册成立,其前身为2002年成立的北京大学阳光志愿者协会,由北京大学学生刘正琛在身患白血病后发起成立,2013年在国内率先由非公募基金会转型为公募基金会。新阳光在成立后本着“用爱自己的心去爱别人”的宗旨,在医疗和教育领域创建了“新阳光病房学校”、“生命的礼物”、“阳光骨髓库”等多个品牌项目。
新阳光基金会根据捐赠人或发起人意愿设立、实行专款专用、在本组织运作框架下有一定独立自主性的专用资金。目前在新阳光设立的专项基金有: 峥爱基金、 助医儿童白血病研究基金、 一元儿童噬血基金、 儿童舒缓治疗专项基金、 香柏树专项基金、 爱在专项基金、 爱里的心先心病专项基金、 V爱血液病公益基金、 源公益专项基金、 焕蓝梦想基金、 京西专项基金、 信美相互少儿救助专项基金等。
新阳光联劝伙伴(竹林计划)是北京新阳光慈善基金支持的医疗、教育等领域的初创或者草根公益组织,新阳光为这些组织提供团队培训、能力建设、联合劝募、宣传倡导、咨询等服务和支持,致力于促进医疗、教育等领域公益事业的发展,更好地服务目标人群。
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本文英文部分为新华社对外部特稿社记者袁全对北京新阳光慈善基金会病房学校的采访刊发全文,为了方便各位读者的理解,新阳光对文章进行了中文翻译并配图,欢迎大家点击文末“阅读原文”查看报道原文。
Feature: Classroom in Ward
by Xinhua writer Yuan Quan
新华社记者 袁全
△ 中国日报对本文进行了转载并在官网首页进行推荐 △
BEIJING, March 25 (Xinhua) -- The children are aged from 2 to 14 and their classroom always smells of disinfectant.
2018年3月25日,北京。这些孩子们从2岁到14岁,然而他们的教室里总是有一股消毒水的味道。
They all wear masks; most have no or thinning hair.
他们总是戴着口罩,大多数人没有头发或者是很少的发量。
They are leukemia children.
他们是患有白血病的儿童。
About 10,000 to 15,000 Chinese children are diagnosed with leukemia each year, most of them in the 2 to 7 age group. Treatment usually lasts two to three years.
在中国,每年大约有10,000-15,000名儿童被诊断为患有白血病,其中大多数年龄段在2-7岁,他们的治疗一般需要花费2-3年的时间。
As well as enduring the pain of bone marrow treatments and chemotherapy, they say goodbye to normal life due to their low immunity. The disease confines them to the ward or home, isolating them from the outside world.
由于免疫力低下加上长期的化疗,他们不得不和正常生活暂时告别。疾病隔离了他们与外界和家庭的关联。
In Peking University First Hospital, in downtown Beijing, 80 percent of the leukemia children have come from elsewhere in China. To help them continue their studies, the Beijing New Sunshine Charity Foundation has cooperated with the hospital to run a free school since 2012.
坐落于北京市区中心地段的北京大学第一医院(妇产儿童医院),80%的白血病患儿来自外省。为了帮助他们得到学习机会,北京新阳光慈善基金会从2012年开始在医院里设立了免费的病房学校。
The classroom, a public space in a corridor, welcomes children of ages. Generally, a full-time teacher and college student volunteers give two classes every week, each lasting 90 minutes. Courses include Chinese, math, English, health arts and science.
教室设立在医院里的走廊,这是一个公共空间。通常是每周上两次课,每次由一位全职的病房学校老师和一位志愿者来为孩子们讲课。课程包含语文、数学、英语、健康、艺术、和科学。
△ 左延的画,图来自新阳光 △
The idea was inspired by an eight-year-old boy named Zuo Yan, from Anhui Province. A decade ago, he was diagnosed with aplastic anemia and the foundation sponsored his treatment in Beijing. Volunteers found a picture he drew of his school days, with the words, "I miss school."
病房学校缘起的理念是受到一位安徽8岁小男孩左延的启发。12年前,左延被诊断患有再生障碍性贫血,新阳光出资帮助了他在北京获得了治疗。偶然间,新阳光志愿者发现左延画了一些他曾经在校园里的画,并在画作上写着“我想上学”的字样。
"I realized these children were very eager to keep learning," says Liu Zhengchen, who suffered leukemia in his university years and founded the foundation to help leukemia children in 2001.
“我意识到这些患病的孩子非常渴求继续学习。”刘正琛说道,他在研究生时期患有白血病,进而在2001年发起并建立了基金会专门帮助白血病患病儿童。
However, Liu and his team found the children difficult to teach. Some close themselves up and rarely talk. Some are restless and uncooperative, always crying.
Most parents, understandably, are indulgent with their children. "I don't know how long his life will last," says one father. "I'll try my best to make him happy."
然而刘正琛和他的团队发现给患病儿童教学是非常困难的。有一些孩子们非常自闭,很少说话;有的孩子则是很容易不安,不愿意配合以及经常哭泣。大部门患病儿童的父母因此非常溺爱孩子。“我不知道他还能活多久。”一位患病儿童的父亲说道,“所以我想给他我能给的最好的,让他开心一点儿。”
But Liu asks teachers to treat these children like all others. If a child has behavioral problems in class, he guides them to correct immediately.
不过刘正琛要求病房学校的老师对待这些孩子们要向对待正常的孩子们一样。如果孩子们在课堂上表现出不良行为,要教导孩子尽快改正。
"They'll eventually go back to school and their communities after recovering. Then nobody will care about them like their parents and doctors do," says Liu. "We want to help them fight the disease, but also expect they will have the ability to deal normal life."
“当他们康复之后,他们会回到原本的学校和社区。那么没有人会像他们的父母或者医生那般悉心照顾他们。”刘正琛说道,“因为我们希望帮助他们抵抗疾病的同时,帮助他们逐渐具有康复后回归正常生活的社交能力”。
Yu Maoyuan, 4, came from southwest China's Guizhou Province. She was diagnosed with leukemia two months ago and was referred to doctors in Beijing "for better treatment".
4岁的于茂源(音译) 来自中国西南地区的贵州省。两个月前,她被诊断出患有白血病,然后她被介绍给北京的医生,是为了获得更好的治疗。
On March 18, she came to the class for the first time. The lesson was about making a telephone with string and two paper cups. Teacher Liu Weixiong wanted to teach children how sound moves through the simple experiment.
3月18日, 她第一次来到病房学校。那天的课程是用绳子和两个纸杯做成电话。病房学校的刘伟雄老师想通过这个简单易学的实验,教孩子懂得声波是如何传递的。
At first, Yu was timid. She lowered her head and leaned on her mother. She did not say anything, but followed the teachers' instructions.
起初,于茂源有些胆怯。她低下头靠在她的母亲身上。她没有开口说话,不过跟着老师的讲解一步一步动手。
"She didn't want to go, so I took her to the class," says Yu's mother, who was encouraged by the student volunteers. "My daughter hasn't gone to kindergarten for a long time."
“她本来是不想来的,我带着她来到这个课堂。”于茂源的母亲说道,这位母亲是在一位学生志愿者鼓励之下带着孩子来到了病房学校。她说道“我的女儿已经很久没有去过幼儿园了。”
The disease has changed her. The chemotherapy annihilated her cancer cells but weakened her. Yu's mother said she once was an active girl, who liked singing and dancing. Now she is quiet. "She seems upset, but doesn't want to tell us."
疾病让于茂源改变了很多。化疗消灭了她体内的癌细胞,但同时也让她变得很虚弱。于茂源的妈妈说她以前是一位活泼开朗的小姑娘,非常喜欢唱歌和跳舞。可是现在的她变得十分安静。于茂源的母亲说:“她看起来很沮丧和消沉,可是却不愿意告诉我们为什么。”
Yu completed the paper cup telephone in half an hour. When she was asked to test it, she raised the cup and said, "Mum, I love you."
于茂源用了半个小时完成了纸杯电话的制作。当志愿者告诉她测试一下这个纸杯电话是否可以使用的时候,她举起纸杯电话对着另一头的妈妈说道“妈妈,我爱你。”
Everybody cheered. Yu laughed and said it again, louder. Her mother, on the verge of tears, said it was the happiest day since Yu first went to hospital.
每个人因此欢呼雀跃,于茂源终于展露笑颜并且再次更大声地对她的妈妈说了一遍“我爱你”。于茂源的母亲含着眼泪说这是自从女儿生病之后她最幸福的一天。
△ 新阳光病房学校项目图片,图来自新阳光 △
In the ward, happy times are short, and pain can strike at any time.
在病房学校里,欢乐的时光是短暂的,更多是痛苦的突然来袭。
Sun Peirui, 10, drew a picture of a golden lion which was put on the wall. However, he stopped coming to class when he became too weak due to a new phase of chemotherapy. His parents had abandoned him after divorcing. A welfare home took him in and sent him to Beijing from his hometown Shandong Province for treatment last year.
10岁的孙培瑞画了一幅金色狮子的画并挂在了墙上。然后由于新一阶段的化疗,他的体质更加虚弱,因此无法继续来病房学校上课。他的父母离婚之后将他抛弃了,一所福利院收留了他。
His nose bleeds frequently for up to an hour. His mouth is full of sores, making it hard to eat.
他经常流鼻血,最长的时候长达1小时。他的嘴里几乎溃疡了,这导致他很难进食。
"He missed the class very much and asked me when he could return," says care worker Bu Xiurong, 62.
“他非常怀念曾经在课堂的时光,他时常问到什么时候可以回去。”62岁的护工卜秀荣(音译)说道。
Many college students have helped as teachers, but they can't know parenting.
许多大学生以志愿者老师的身份来帮忙,但是他们并不懂带孩子。
Lyu Wanxin, a sophomore student volunteer, was impressed by a boy who cried at having to wear his mask. Lyu failed to pacify him. "The job needs more than I expected," he says.Doctors and nurses cannot ease the mental stress of their patients.
吕万昕是一个大二的志愿者,让他印象深刻的是一个小男孩因为必须戴口罩而一直哭,吕万昕并没有成功安抚这个小男孩。他说:“这份工作比我预期的东西要多很多”。医生和护士也无法安抚家长们的精神压力。
Liu Weixiong wants more people with social experiences to join the program, as the classroom is about company as much as study, he says. He used to care for mentally ill children in Malaysia and Singapore.
刘伟雄希望更多有社会经验的人加入到病房学校项目中,因为这个项目提供的是陪伴式教育。刘伟雄之前在马拉西亚和新加坡都从事为患有精神类疾病儿童提供关怀的工作。
"We welcome the elderly, who can share their stories and experience. They are also needed for a child's growth."
“我们很欢迎老年人,他们可以来分享自己的故事和经验。他们在孩子的成长中也是非常重要的。”
△ 新阳光病房学校项目图片,图来自新阳光 △
The foundation has opened 26 ward classes in and outside hospitals in 13 provinces. More than 5,000 children have attended them. However, they have just 17 full-time or part-time teachers like Liu Weixiong.
北京新阳光慈善基金会已经在13个省区开设了26间病房学校。该项目已经服务了超过5000名儿童。然而,病房学校目前只有17位像刘伟雄这样的全职或兼职老师。
The pupils also include children with cancer and kidney diseases, who need long-term treatment.
病房学校也服务患有癌症和肾脏疾病的孩子,这些孩子往往需要长期住院接受治疗。
Liu Zhengchen plans to expand the faculty and provide more courses for different school ages."I hope we can help more children with serious illnesses maintain their learning and social adaptability, so they can return to normal life as soon as possible."
刘正琛计划扩大病房学校团队,并研发出一系列针对不同年龄适龄儿童的课程。他说:“我希望我们可以帮助更多患有重大疾病的孩子保持学习和适应社会的能力,这样可以帮助他们尽快回归到正常的生活中”。
△ 欢迎点击上方图片,支持新阳光病房学校项目 △
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