One In A Thousand
爱不罕见
There are more than 2000 rare diesease patients in Singapore. Living with rare diesease is often a lifelong uphill battle. One in a Thousand takes you through an intimate journey with these patients and their families as they strive to live a fulfilling and meaningful life with love abundant. 新加坡有两千多名的罕见疾病患者。多数的罕见疾病是无法治愈的，而患者面临的往往是充满未知的人生。《爱不罕见》带你走进6个病患的家庭世界，见证家人如何在疾病的磨难中陪伴着他们，和他们一起活出生命的曙光。
- Oldest First
- Newest First
3-year-old Ziyi is the only known SCN8A encephalopathy patient in Singapore. This disease is a very rare form of epilepsy that causes seizures and developmental delay. And it has no cure. Ziyi has not spoken a word since she was born, but her mother is determined to help her live a fulfilling life. 患有罕见的 SCN8A 基因突变相关癫痫性脑病，3岁的林子怡自出生以来从没说过一个字。子怡在新加坡目前是这类癫痫性脑病的唯一患者。这种疾病至今无治疗方法。面对未知的未来，母亲如何陪伴着子怡度过每一天？
3-year-old Ziyi is the only known SCN8A encephalopathy patient in Singapore. This disease is a very rare form of epilepsy that causes seizures and developmental delay. And it has no cure. Ziyi has not spoken a word since she was born, but her mother is determined to help her live a fulfilling life. 患有罕见的 SCN8A 基因突变相关癫痫性脑病，3岁的林子怡自出生以来从没说过一个字。子怡在新加坡目前是这类癫痫性脑病的唯一患者。这种疾病至今无治疗方法。面对未知的未来，母亲如何陪伴着子怡度过每一天？
When Joel was born, no one knew if he would be able to survive beyond his first year. He is diagnosed with DiGeorge Syndrome, a rare genetic disease that results in a serious defect in his heart. Yet he survived against the odds. Today, Joel is 14 years old. But once again, his life is on the line. 江怀恩刚出世的时候，没有人知道这个小宝宝是否能够活过那一年。他患有迪巧治综合症，一种罕见的疾病，导致他有严重的心脏缺陷。几经考验，江怀恩如今已是个14岁的青少年，但他却又得再次面临生存的挑战。
When Joel was born, no one knew if he would be able to survive beyond his first year. He is diagnosed with DiGeorge Syndrome, a rare genetic disease that results in a serious defect in his heart. Yet he survived against the odds. Today, Joel is 14 years old. But once again, his life is on the line. 江怀恩刚出世的时候，没有人知道这个小宝宝是否能够活过那一年。他患有迪巧治综合症，一种罕见的疾病，导致他有严重的心脏缺陷。几经考验，江怀恩如今已是个14岁的青少年，但他却又得再次面临生存的挑战。
Three-year-old Rayner was born with a growth on his lips due to venous malformation, a congential rare disease caused by abnormal development of the veins. The growth cannot be removed completely currently. And Rayner's parents are worried about how their child's appearance will affect his psyche. 因为右上唇的大肿块，今年3岁的刘承凯在出生的时候，嘴巴就不能完全合起来。承凯患有先天性、罕见的血管畸形，而这个肿块会随着年龄越长越大。因为承凯长得与众不同，他和家人不时也会受到异样的眼光。
Three-year-old Rayner was born with a growth on his lips due to venous malformation, a congential rare disease caused by abnormal development of the veins. The growth cannot be removed completely currently. And Rayner's parents are worried about how their child's appearance will affect his psyche. 因为右上唇的大肿块，今年3岁的刘承凯在出生的时候，嘴巴就不能完全合起来。承凯患有先天性、罕见的血管畸形，而这个肿块会随着年龄越长越大。因为承凯长得与众不同，他和家人不时也会受到异样的眼光。
10 years ago, Felicia was diagnosed with a rare neuromuscular condition that causes weakness in her muscles and even her ability to breathe. Throughout her journey, Felicia's husband soldiered on with her. Though she has stage 4 cancer now, she is determined to continue living for their daughter. 34岁那年，卢佩佩被诊断患有一种罕见的神经肌肉疾病，导致她四肢无力、口齿不清、甚至无法呼吸。患病十年里，丈夫一直陪伴左右。虽然她目前也罹患癌症，但卢佩佩拒绝向病魔俯首称臣；她坚决要陪伴女儿度过青春期。
10 years ago, Felicia was diagnosed with a rare neuromuscular condition that causes weakness in her muscles and even her ability to breathe. Throughout her journey, Felicia's husband soldiered on with her. Though she has stage 4 cancer now, she is determined to continue living for their daughter. 34岁那年，卢佩佩被诊断患有一种罕见的神经肌肉疾病，导致她四肢无力、口齿不清、甚至无法呼吸。患病十年里，丈夫一直陪伴左右。虽然她目前也罹患癌症，但卢佩佩拒绝向病魔俯首称臣；她坚决要陪伴女儿度过青春期。
Zachary was a cheerful baby before he was diagnosed with a rare and severe neurological disorder that causes his body to degenerate progressively. Despite the disease's poor prognosis, Zachary lives past his 4th birthday. With strength and love, his parents continue to journey each day with him. 四岁的黄靖恒原本是个活泼爱笑的小宝宝。但在一岁半，他被诊断出患有一种罕见的神经系统疾病，导致他的身体功能逐步退化。虽然他目前得靠各种仪器维持生命，但父母还是带着爱和力量陪伴他度过生命中的每一天。
Zachary was a cheerful baby before he was diagnosed with a rare and severe neurological disorder that causes his body to degenerate progressively. Despite the disease's poor prognosis, Zachary lives past his 4th birthday. With strength and love, his parents continue to journey each day with him. 四岁的黄靖恒原本是个活泼爱笑的小宝宝。但在一岁半，他被诊断出患有一种罕见的神经系统疾病，导致他的身体功能逐步退化。虽然他目前得靠各种仪器维持生命，但父母还是带着爱和力量陪伴他度过生命中的每一天。
Looking like any other 20-year-old, Nicole actually lives with an invisible illness. She has not one, but three different autoimmune diseases, which cause her immune system to attack her body. Young and living with a rare disease, how does Nicole define who she is and how she will live her life? 20岁的林妤祈看起来和同龄少女没什么不同，但她却患有隐形的罕见疾病。13岁那年，她被诊断患有不只一种，而是三种不同的自身免疫性疾病，导致免疫系统攻击自身的器官。面对疾病，她如何挖掘自我、找到人生方向？
Looking like any other 20-year-old, Nicole actually lives with an invisible illness. She has not one, but three different autoimmune diseases, which cause her immune system to attack her body. Young and living with a rare disease, how does Nicole define who she is and how she will live her life? 20岁的林妤祈看起来和同龄少女没什么不同，但她却患有隐形的罕见疾病。13岁那年，她被诊断患有不只一种，而是三种不同的自身免疫性疾病，导致免疫系统攻击自身的器官。面对疾病，她如何挖掘自我、找到人生方向？