中新网北京9月13日电(记者马海燕)“中国现在每年新增苯丙酮尿症2000例。如果每年新增2000个傻孩子站在你面前，10年后将是20000个，你的感受会怎样？”

Beijing Beijing on September 13 (Reuters)(Reporter MaHaiYan)"China is now an annual increase of 2000 patients with phenylketonuria disease.If every year 2000 new silly child stand in front of you,Ten years later will be 20000,How would you feel?"

　　在第七个“中国预防出生缺陷日”之际，“苯丙酮尿症患儿特殊奶粉补助项目”中期总结会今日在北京召开，上海市儿科医学研究所副所长顾学范的话问住了所有人。

In the seventh"China, prevention of birth defects"of,"Propiophenone enuresis children special milk powder subsidy project"Today in the middle of the meeting was held in Beijing,Shanghai pediatrics medical deputy director of the institute GuXueFan words WenZhu all people.

　　苯丙酮尿症(简称PKU)是极少数可治疗的先天性遗传代谢病，患者需终生通过特殊食物进行干预治疗。患儿在出生1个月内接受治疗，可不出现智力损害；半岁开始治疗，智商可接近正常；1岁以后开始治疗，智商常在50以下。由于患儿早期没有典型症状难以引起父母注意，但进行新生儿疾病筛查可及时发现。

Phenylketonuria disease(Referred to as PKU)Is a few can cure congenital genetic metabolic disease,Patients need to life through the special food for intervention treatment.Children born in 1 months for treatment,Don't have mental damage;Half years old start treatment,Intelligence quotient (IQ) can be close to normal;1 years later start treatment,Intelligence quotient (IQ) often under 50.Due to the early children no typical symptoms caused by parents to pay attention to,But for neonatal screening disease can be found in time.

　　作为国内首个苯丙酮尿症救治项目，该项目从2009年12月至2012年6月，共为中西部地区509名贫困PKU患儿免费提供无苯丙氨酸配方粉补助，建立了规范的治疗随访和管理体系。94.24%受补助患儿能够坚持治疗，高于非补助患儿80.46%。受补助患儿体格和智力发育正常比例分别达到94.19%和94.26%，治疗已见成效。

As the first domestic phenylketonuria disease treatment project,The project from December 2009 to June 2012,As the central and western region a total of 509 poor children PKU provide free without phenylalanine formula powder subsidies,Has established the standard treatment follow-up and management system.94.24% of children by subsidies to adhere to the treatment,Than the children 80.46% subsidy.Subsidised physical and mental development of children normal proportion was 94.19% and 94.26% respectively,Treatment has paid off.

　　全国妇幼卫生监测办公室主任朱军表示，该项目拉开了政府、医疗单位及社会力量共同救助PKU患儿的序幕，推动了新生儿筛查工作良性发展。通过实施这一项目，不仅提高了相关机构的业务管理水平，也完善了PKU患儿募集和特殊奶粉发放流程，为患儿的治疗争取了宝贵时间。同时，项目为患儿提供统一的专用病历，建立规范的管理档案，编制膳食管理手册，帮助他们在家中管理患儿膳食。

The anchorman of the maternal and child health monitoring office director said,The project to draw attention to the government/Medical units and social forces mutual aid is the prelude of PKU children,Promote the neonatal screening work benign development.Through the implementation of the project,Not only improve the relevant agency business management level,Also perfected the PKU children raise and special milk powder issue process,For the treatment of children for the precious time.At the same time,Projects for the children to provide uniform special medical records,To establish a standardized management files,Prepare meals management manual,To help their children at home management meal.

　　作为具有30多年临床经验的专家，顾学范说，国外有PKU患儿通过治疗成为医生、律师等高水平人才。由于特殊奶粉昂贵，中国许多家庭还用不起，还有边远地区患儿没能在出生后第一时间筛查出这一疾病，耽误了最佳治疗时机。这些都需政府和社会各界加大对PKU患儿的关注和投入，对这些孩子进行免费治疗，这事关每个家庭的幸福，也是事关民族素质大计。(完)

As a 30 years clinical experience of experts,GuXueFan said,PKU abroad have children through the treatment to become a doctor/Lawyer contour level talents.Due to the special milk powder expensive,Many Chinese families still can't afford to use,There are children in rural areas will not be at the first time after birth screening out the disease,The best time to delay treatment.All these need the government and the society from all walks of life to PKU children more attention and investment,For these children free treatment,This is every family happiness,Also is for the national quality.(finish)