Refer China: 蝴蝶之家介绍 I Introduction to Butterfly Children's Hospices

Welcome to China\x26#39;s first children\x26#39;s palliative charity! Find out about the little residents and how you can help.

蝴蝶之家儿童舒缓护理中心（简称蝴蝶之家）是全国首家为危重症儿童提供儿童舒缓护理与安宁疗护服务的慈善组织。

Butterfly Children's Hospices (here in after referred to as BCH) is the first Children's Hospice in China to provide palliative and end-life care for children with life-limiting and life threatening conditions.

2010年4月开始与长沙市第一社会福利院(2022年转至长沙市儿童福利院）合作，主要为院内重症孤残儿童提供临终关怀,舒缓照护，安宁疗护服务。主要为重症儿童及其家庭提供专业的儿童舒缓护理服务支持。

Working in co-operation with the First Changsha Welfare Center since April 2010 , transferred to the Changsha Children's Welfare Center in 2022 .With the ambition of alleviating the suffering of life-threatened children and their families in China through the introduction of children's palliative care services. focusing on providing professional pediatric palliative care services and support for critically ill children and their families. Then developed models of loving palliative care and treatment that suit the local situation and values culture.

Olivia

来蝴蝶之家时，Olivia不到2岁。因为肌张力过高，Olivia全身紧绷，脆弱得像个一碰就碎的瓷娃娃，任何的触碰都会吓她一大跳。现在Olivia已经11岁了，通过在蝴蝶之家有安全感的舒缓护理，成长为了性格开朗、爱笑的漂亮姑娘，她也很喜欢大家叫她"小美女"。

When Olivia first arrived at BCH, she was not yet 2 years old. Due to high muscle tension, her entire body was stiff, as fragile as a porcelain doll that could shatter with a touch. Any kind of physical contact would startle her. Now, at 11, with the palliative care that has made her feel safe at BCH, she has grown into a cheerful, smiling, and beautiful girl. She loves it when people call her "little beauty."

Noah

Noah来到蝴蝶之家时不到1岁，因为严重的脑积水，他的脑袋长成了一个倒三角形，脑门就像用保鲜膜裹着的一个水袋。他的双眼向上翻着布满血丝，眼球被压迫到只剩下眼白，他当时对外界几乎失去了反应。医生当时判定他活不过半年。但是直到现在，Noah仍在蝴蝶之家平静的生活着……

When Noah first came to BCH, he was less than a year old. Due to severe hydrocephalus, his head had formed into an upside-down triangle shape, and his forehead looked like a water balloon wrapped in plastic wrap. The pressure on his eyeballs left only the whites visible. At that time, he barely reacted to the outside world, and doctors predicted he wouldn't live more than six months.But until now, Noah is still living a peaceful life in Butterfly Home...

蝴蝶之家作为儿童舒缓安宁领域的灯塔，致力于推广、促进和教育来促进儿童舒缓安宁疗护服务的发展。

BCH has become a beacon of children's palliative care in China, advocating, inspiring, and providing training to foster excellence in holistic palliative care services.

我们现在与医院、社会福利机构和专业协会合作，推动和探索国内儿童舒缓安宁全方位服务模式。开展工作如下：

We are now partnering with hospitals, social welfare centers, and professional associations to develop and support holistic models of children's palliative care throughout China. Our key initiatives include:

一

2023年设计并改造了湖南省儿童医院的三间儿童安宁疗护病房。我们正在探索开发全方位的服务模式，期待不仅在医院，还能在社区开展相应的服务支持。

Designing and renovating three pediatric palliative care wards called "Blessed Butterfly Home"at Hunan Provincial Children's Hospital in 2023. We are collaborating with partners to continue developing holistic care models both in hospitals and within the community for families with life-limited children.

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二

加强、推广和探索儿童舒缓集中护理模式，筹备家庭护理中心。在与医疗机构合作服务中探索支持家庭的模式。

Strengthening, embedding, and promoting pediatric palliative care in preparation for China's first Family Care Center. We are exploring models that support families in need in collaboration with medical organizations.

三

与专业机构合作创建标准化体系，为同类型机构提供支持。

Collaborate with professional organizations to establish a standardized system to support similar organizations.

四

通过建立护理员和护士培训基地，提供定制化专业培训。

Offering customized and accredited training and education for caregivers and nurses through the establishment of a Caregivers and Nurse Training Base.

五

推广儿童舒缓安宁领域的专业教育。

Promoting the education of pediatric palliative care more broadly.

六

与专业机构合作筹备儿童舒缓安宁行业报告，共同推动国内儿童舒缓安宁领域的发展。

Supporting the development of the pediatric palliative care industry in China through the preparation of CPC industry reports with the professional organizations .

BCH获得的多项奖项和荣誉：

BCH has received numerous awards and accolades both domestically and internationally, including:

（一）2012年，荣获长沙市政局颁发的 "优质服务品牌"。

The title of "Quality Service Brand" by the Changsha Municipal Civil Affairs Bureau in 2012.

（二）2015年，被长沙市民政局评为3A级社会组织

Recognition as a 3A-level Social Organization by the Changsha Municipal Civil Affairs Bureau in 2015.

（三）2017年，原联合创始人Lynda Gould因创建蝴蝶之家做出的的贡献，英国女王伊丽莎白二世为其颁发"员佐"勋章。

Co-founder Lynda Gould being awarded an MBE by Her Majesty Queen Elizabeth II for services to China in 2017.

（四）出资并监制国内首部关于儿童舒缓护理的教育短片，该片并在2017年中国公益节上获得了公益创新奖。

Producing and investing in the first short film on pediatric palliative care, which won the Public Welfare Innovation Award at the China Philanthropy Festival in 2017.

（五）2018年，理事长符晓莉被银杏基金会入选为"银杏伙伴"

CEO Naomi Fu being named an Outstanding Youth Leader in Public Welfare and a "Ginkgo Follower" by the Ginkgo Foundation in 2018.

（六）2018年~2020年，"蝴蝶关爱重症儿童计划"入选中国妇女发展基金会的"超仁妈妈"项目。

The Butterfly Love Program for Severely Ill Children being recognized as an excellent public welfare project by the "Super Kind Mother" joint fundraising platform of the China Women's Development Foundation from 2018 to 2020.

（七）2021年，蝴蝶之家获批长沙市民政局"慈善机构"资质。

Formal recognition of BCH as a legal charity by the Changsha Civil Affairs Bureau in 2021.

（八）2022年，蝴蝶之家的公益项目荣获中国公益项目大赛"百强项目"。

In 2022, BCH project was recognized as one of the "Top 100 Projects" in the China Public Welfare Project Competition.

（九）2023年，"福蝶小家" 项目入选凤凰网行动者联盟年度"十大公益项目"

The Blessed Butterfly Home project being chosen as one of the "Top Ten Public Welfare Projects" by the Action Alliance of Phoenix New Media in 2023.

（十）2023年荣获中国新闻网"中华慈孝人物团体奖"

Receiving the Chinese Filial Piety Group Award from China Daily in 2023.

作为中国首家儿童舒缓安宁机构，也作为行业领域的的先行者，致力于推广、激发、教育和支持更多机构能共同为重症儿童及家庭提供专业的全方位的舒缓安宁服务。

As the first children's hospice in China, Butterfly Children's Hospices (BCH) has become a leader in pediatric palliative care, advocating, inspiring, and training for excellence in holistic care for children with life-limiting conditions.

在其13年的历史中：

Over its 13-year history, BCH has:

一

在长沙和南京建立了两个"蝴蝶之家"。

Established two Butterfly Homes in Changsha and Nanjing.

二

为超过200名儿童提供了舒缓护理，其中100多名儿童接受了临终关怀

Provided care to over 200 children, with more than 100 receiving compassionate end-of-life care.

三

大约 40 名儿童被收养。

Supported approximately 40 children who survived and have since been adopted into loving, "forever" families.

四

2015年至2022年，与知名儿童医院合作举办了五次国际会议（其中三次在长沙，一次在北京，一次在上海），推动儿童舒缓安宁服务的理念和认知在专业医疗领域的传播。

Hosted five international conferences in collaboration with renowned children's hospitals from 2015 to 2022 (three in Changsha, and one each in Beijing and Shanghai), promoting awareness and understanding of children's palliative care in medical area .

五

翻译国际相关学术资料，制作并展出首部中文儿童舒缓护理的教育视频，以提高社会大众对儿童舒缓安宁服务的认知。

Translated medical resources and produced the first educational video in Chinese to enhance understanding of pediatric palliative care in public area .

六

2017年，接待英国皇室安妮公主的来访

Welcomed Her Royal Highness Princess Anne of the British Royal Family in 2017.

七

2018年，与湖南省儿童医院合作开展首家儿童舒缓疗护门诊.

Partnered with the Pediatric Medical Research Institute of Hunan Provincial Children's Hospital in 2018.

八

2020年，蝴蝶之家与湖南儿童医院在《中国当代儿科杂志》联合发表《儿童舒缓治疗的意义和发展现状》文章。

To establish a Pediatric Palliative Care Clinic, co-authoring an article titled The Significance and Current Development Status of Pediatric Palliative Treatment, published in the Chinese Journal of Contemporary Pediatrics in 2020.

九

2022年，在湖南省谢子龙影像艺术馆举办首次"'希冀之光'—蝴蝶之家12周年影像展"，强调"生命陪伴生命，生命影响生命，生命唤醒生命"，超过3万名观众参与看展。

Held the first Photo exhibition, A Beacon for Hope – 12 Years of the Butterfly Home, at the Hunan Xie Zilong Photography Museum. The exhibition emphasized that every life, no matter how short, has inherent value. Over 30,000 visitors attended the 12-day event.

十

2023年，蝴蝶之家和中国社会福利协会合作筹备编撰《儿童舒缓照护服务规范》团体标准。

Collaborated with the China Association of Social Welfare in 2023 to draft the group standard Specifications for Pediatric Palliative Care Services.

理念 Philosophy

无论长短，每个生命都是珍贵的，值得被珍视。

Every child's life is valuable and should be valued, no matter how short

使命 Mission

无论孩子在世还是离世，我们都确保他和他的家人被关爱和被尊重。

Whether a child is living or has passed away, we ensure they and their families are treated with love and respect.

愿景 Vision

我们的愿景是通过引领、合作、倡导和教育，支持有需要的儿童和家庭，推动国内儿童舒缓安宁行业领域的发展。

Our vision is to support the children in need and their families ,promote excellence in children's palliative and hospice care in China through leadership, collaboration, advocacy and education.

价值 Value

我们相信：

无论生命的长短，每个孩子的生命都弥足珍贵、值得被珍视。

孩子及其家庭的迫切需要，是我们开展每一项工作的原动力。

每个孩子都应在临终时享有尊严。

每个孩子都应享有生于世便善存于世的机会

We believe that:

Every child's life is valuable and should be valued, no matter how short

The voice of the child and their family underpins every action we take

Dignity in death should be afforded to every child

Every child should be given the opportunity to achieve their full potential in life

Every opportunity should be taken to educate and support families to make an alternative choice to abandoning their child

时长10:51

Duration: 10:51

当然，如果您想爱心支持
Of course, if you would like to offer your heartfelt support

重绝症儿童的舒缓护理工作，
for the palliative care of critically ill children,

或是对其他小蝴蝶的动态也感到好奇的话，
or if you are curious about the updates on our little butterflies,

可以一起加入我们床位捐助计划，
you can join our Bed Sponsorship Program,

每季度我们都会更新孩子们的故事发送至您的邮箱~
Every quarter, we will send you updates on the children's stories via email.

他们都是折翼的天使，
They are angels with broken wings,

他们的未来，
Their future,

需要您和我们一起来支持！
depends on you and us working together to support them!

(Click to join the monthly donation program.)

您也可以点击下方图片
You can also click on the image below

选购我们的文创产品
to browse and purchase our cultural&creative products

通过义买的方式来支持蝴蝶之家哦～
and support Butterfly Children's Hospices through charity purchases.

(Click to purchase cultural&creative products.)

他们都是折翼的天使，
They are angels with broken wings,

他们的未来，
Their future,

需要您和我们一起来支持！
depends on you and us working together to support them!

儿童舒缓护理服务

Pediatric palliative care services

儿童舒缓护理服务是指对患有限制性生命疾病的儿童及其家庭，在医疗、社会、情感和精神方面的痛苦与困境作出的反应与支持。重点是提升儿童的生活质量和对于家庭的支持，包括管理不适症状、为父母提供重压中的喘息机会及后期的哀伤辅导服务。护理应该从诊断时或诊断后不久就开始提供，并对因患儿离世而哀伤的家庭持续提供哀伤辅导的支持。

Pediatric palliative care services refer to the response and support provided to children with life-limiting illnesses and their families in addressing the medical, social, emotional, and spiritual distress they face. The primary focus is on improving the child's quality of life and supporting the family, including managing discomfort, offering respite for parents under stress, and providing bereavement counseling services. Care should begin at the time of diagnosis or shortly thereafter, and bereavement support should continue for families grieving the loss of their child.

蝴蝶之家

Butterfly Children's Hospices

蝴蝶之家儿童舒缓护理中心（简称蝴蝶之家）是全国首家为危重症儿童提供儿童舒缓护理与安宁疗护服务的慈善组织。2010年4月开始与长沙市第一社会福利院(2022年转至长沙市儿童福利院）合作，为院内重症孤残儿童提供临终关怀、舒缓照护、安宁疗护服务。2011年11月在长沙市民政局正式注册，主要为重症儿童及其家庭提供专业的儿童舒缓护理服务支持。

Butterfly Children's Hospices(here in after referred to as BCH) is the first charitable organization in China to provide palliative and hospice care services for children with life-limiting conditions. In April 2010, BCH began collaborating with the ChangSha No.1 Social Welfare Institute

(transferred to the Changsha Children Welfare Institution in 2022) to offer end-of-life care, palliative care, and hospice services primarily for critically ill orphans and disabled children within the institute. In November 2011, it was officially registered with the Changsha Civil Affairs Bureau, focusing on providing professional pediatric palliative care services and support for critically ill children and their families..

截至2023年12月，蝴蝶之家已为200多名0至17岁的重绝症孤残儿童提供了舒缓护理、康复救治。其中有100多名儿童接受了临终关怀，近40名被家庭收养。除此之外，蝴蝶之家与湖南省儿童医院在2023年，也开展了湖南省首家儿童安宁病房"福蝶小家"项目的合作。同时，蝴蝶之家也在积极推进筹建家庭护理站，推动儿童舒缓护理居家服务。

As of December 2023, Butterfly Children's Hospices has provided palliative care and rehabilitative treatment to more than 200 critically ill orphaned children, aged 0 to 17. Among them, over 100 children received end-of-life care, and nearly 40 were adopted by families. In addition, Butterfly Children's Hospices partnered with Hunan Children's Hospital in 2023 to launch the "Fudie Home" project, the first pediatric palliative care ward in Hunan Province. Meanwhile, Butterfly Children's Hospices is actively working on establishing home care stations to promote pediatric palliative care home services.

往期精彩推荐

Recommended Highlights

（点击标题跳转观看）

(Click the title to watch)

【央视】遇见你丨蝴蝶之家——为重症孤残儿童点亮生命中的一盏灯

[CCTV] "Meeting You" | Butterfly Children's Hospices — Lighting up the lives of critically ill orphaned children

【喜讯】"福蝶小家"儿童安宁疗护病房项目荣获2023年凤凰网行动者联盟"年度十大公益项目奖"

[Good News]The "Fudie Xiaojia" pediatric hospice care ward project was selected as one of the "Top 10 Projects" of Action League 2023 Charity Ceremony.

【Gentleness温和床位】入住新的小蝴蝶啦！床位捐赠人看过来~

[Gentleness Crib] A new little butterfly has arrived! Attention crib sponsors~

【爱的小窝】参加月捐的小伙伴看过来！

[Love's Little Nest] Friends who participate in monthly donations, take a look!