Wasant Pornswan, Rajchagool Chaiyan
Division of Medical Genetics, Department of Pediatrics, Faculty of Medicine, Siriraj Hospital, Mahidol University, Bangkok, Thailand.
J Med Assoc Thai. 2009 Sep;92(9):1256-62.
Down Syndrome Parents' Support Group Siriraj Hospital was established on February 14, 1993. It consists of a group of pediatricians, nurses, parents of children with Down Syndrome (DS) who received care at the Genetics Clinic, Division of Medical Genetics, Department of Pediatrics, Faculty of Medicine Siriraj Hospital. The objective is to educate parents with DS children whose diagnosis of DS given at birth causing grief and disappointment which led to abandonment of these children at Siriraj Hospital almost every other month (fifteen years ago) due to lack of education on the part of the medical professionals. Down Syndrome Parents' Support Group Siriraj Hospital received financial support from Terres des hommes of the Netherlands in the first 6 years. Later it received partial financial support from a government agency; however, the majority of the funding came from private donations. Throughout the years, the group had several successful activities: Siriraj Down Syndrome Annual Meeting since 1991 (total of 17 years) and Down Syndrome Provincial Lecture tour, so called "Down Sunjorn" since 1997. The latest in 2008 (the tenth) which was organized with major provincial hospitals of the Ministry of Public Health (MOPH). Moreover the group took part in (1) working with the Ministry of Education for Thailand Educational Act B.E. 1999 which promotes integration of DS children into normal schools all over the country, (2) working with the Department of Maternal & Child Health, MOPH started the Child Development Center in the provincial community hospitals where the service was lacking; (3) working with Ministry of Social Development' and Human Security to initiate an educational program for the DS families in the rural areas (from 2001 - 2006) to help educate families with DS children and raise awareness for their educational & legal rights. In the past 15 years, there was no more abandonment of DS children at Siriraj Hospital and others; these children received better care and improved quality of life.
诗里拉吉医院唐氏综合征患儿家长支持小组成立于1993年2月14日。它由一群儿科医生、护士以及在诗里拉吉医院医学院儿科学系医学遗传学教研室遗传门诊接受治疗的唐氏综合征（DS）患儿的家长组成。其目标是教育那些孩子被诊断为唐氏综合征的家长，因为孩子出生时被诊断为唐氏综合征会让家长悲痛失望，而在15年前，由于医疗专业人员缺乏相关教育，几乎每隔一个月就会有家长在诗里拉吉医院遗弃这些孩子。诗里拉吉医院唐氏综合征患儿家长支持小组在前6年得到了荷兰 Terre des hommes的资金支持。后来它得到了一个政府机构的部分资金支持；然而，大部分资金来自私人捐赠。多年来，该小组开展了多项成功的活动：自1991年起举办诗里拉吉唐氏综合征年会（共17年），自1997年起开展唐氏综合征省级巡回讲座，即“唐氏阳光之旅”。最近一次是在2008年（第十次），与公共卫生部的各大省级医院联合举办。此外，该小组还参与了以下工作：（1）与教育部合作推动泰国1999年教育法案，该法案促进唐氏综合征患儿融入全国的普通学校；（2）与公共卫生部母婴健康司合作，在服务匮乏的省级社区医院开办儿童发展中心；（3）与社会发展与人类安全部合作，为农村地区的唐氏综合征家庭启动一项教育计划（2001年至2006年），以帮助教育有唐氏综合征患儿的家庭，并提高他们对教育和法律权利的认识。在过去的15年里，诗里拉吉医院和其他地方不再有唐氏综合征患儿被遗弃的情况；这些孩子得到了更好的照料，生活质量也有所提高。
