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广东省人民政府首页  >  要闻动态  >  广东要闻

父母每天和食物“赛跑”

来源: 南方日报网络版     时间: 2019年05月22日 14:19:19
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哪里有吉林市酒店住宿发票-哪里可以开吉林市酒店住宿发票██【电\微 15813★310971 李先生】【Q; 25880★8054】 ██▓信誉100%,专业100%,选择我们长期合作共赢!公司经百度推广!父母每天和食物“赛跑”

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(一)(位)(苯)(丙)(酮)(尿)(症)(患)(儿)(正)(在)(吃)(饭)(,食)(物)(是)(用)(特)(制)(面)(粉)(和)(萝)(卜)(丝)(做)(成)(的)(烙)(饼)(。(家)(长)(供)(图)()  对)(于)(苯)(丙)(酮)(尿)(症)((PKU)患)(儿)(来)(说)(,如)(果)(放)(弃)(治)(疗)(,会)(发)(生)(什)(么)(?  随)(着)(年)(龄)(的)(增)(长)(,他)(们)(的)(智)(商)(会)(慢)(慢)(降)(低)(,出)(现)(深)(度)(智)(力)(孱)(弱)(;他)(们)(可)(能)(会)(出)(现)(自)(虐)(倾)(向)(,身)(上)(所)(有)(毛)(发)(、皮)(肤)(逐)(渐)(白)(化)(;他)(们)(的)(全)(身)(肌)(肉)(可)(能)(会)(不)(停)(抽)(搐)(,然)(后)(变)(傻)(变)(呆)(直)(至)(死)(亡)(。对)(于)(这)(群)(“不)(食)(人)(间)(烟)(火)(”的)(孩)(子)(来)(说)(,因)(为)(体)(内)(缺)(少)(一)(种)(酶)(,终)(生)(不)(得)(不)(靠)(“特)(制)(食)(物)(”存)(活)(,有)(的)(甚)(至)(还)(要)(依)(赖)(高)(价)(药)(物)(维)(持)(。对)(他)(们)(而)(言)(,吃)(顿)(正)(常)(的)(饭)(就)(是)(奢)(侈)(。  “孩)(子)(六)(岁)(了)(,从)(未)(吃)(过)(我)(一)(滴)(奶)(”  “小)(林)((化)(名)()三)(岁)(多)(上)(幼)(儿)(园)(,今)(年)(六)(岁)(。孩)(子)(自)(出)(生)(没)(有)(吃)(过)(妈)(妈)(的)(奶)(。”爷)(爷)(告)(诉)(记)(者)(。  据)(了)(解)(,因)(为)(患)(病)(,小)(林)(上)(学)(也)(曾)(一)(度)(遇)(到)(困)(难)(,也)(被)(一)(些)(学)(校)(拒)(绝)(过)(。“因)(为)(幼)(儿)(园)(多)(是)(吃)(集)(体)(饭)(,了)(解)(这)(种)(病)(的)(老)(师)(并)(不)(多)(,我)(们)(对)(外)(只)(能)(说)(孩)(子)(对)(蛋)(白)(质)(过)(敏)(,所)(以)(每)(天)(把)(孩)(子)(接)(回)(家)(吃)(饭)(。”说)(到)(这)(,小)(林)(的)(母)(亲)(一)(度)(哽)(咽)(,“真)(的)(是)(太)(难)(太)(难)(了)(!”  为)(防)(止)(小)(林)(乱)(吃)(食)(物)(,父)(母)(从)(没)(为)(他)(买)(过)(任)(何)(零)(食)(,甚)(至)(连)(肉)(也)(很)(少)(买)(。“每)(次)(出)(门)(走)(亲)(戚)(朋)(友)(,我)(们)(都)(是)(提)(前)(把)(特)(制)(大)(米)(做)(好)(,炒)(菜)(时)(也)(尽)(量)(放)(些)(肥)(肉)(,因)(为)(含)(蛋)(白)(质)(比)(较)(少)(。孩)(子)(只)(能)(吃)(一)(些)(特)(食)(,喝)(点)(特)(奶)(,跟)(着)(我)(们)(吃)(一)(些)(蔬)(菜)(,普)(通)(鸡)(蛋)(对)(孩)(子)(来)(说)(都)(是)(奢)(侈)(品)(。”小)(林)(母)(亲)(说)(。  随)(着)(年)(龄)(增)(长)(,小)(林)(对)(特)(食)(的)(需)(求)(也)(不)(断)(增)(大)(,但)(小)(林)(父)(母)(并)(没)(有)(抱)(怨)(多)(少)(。“孩)(子)(算)(幸)(运)(的)(,毕)(竟)(几)(千)(种)(罕)(见)(病)(中)(能)(治)(疗)(的)(不)(是)(很)(多)(,孩)(子)(是)(经)(典)(型)(的)(苯)(丙)(酮)(尿)(症)(,身)(体)(的)(耐)(受)(范)(围)(稍)(大)(一)(些)(。我)(们)(尽)(量)(为)(孩)(子)(争)(取)(,毕)(竟)(我)(们)(不)(可)(能)(跟)(孩)(子)(一)(辈)(子)(。”  “食)(物)(含)(多)(少)(蛋)(白)(质)(,我)(已)(烂)(熟)(于)(胸)(”  100克)(的)(特)(制)(大)(米)(,50克)(的)(芹)(菜)(,30克)(的)(花)(生)(,80克)(的)(苹)(果)(,50克)(的)(特)(制)(奶)(粉)(,这)(就)(是)(小)(林)(的)(午)(餐)(“菜)(单)(”。每)(一)(样)(食)(物)(都)(要)(经)(过)(精)(确)(计)(算)(,既)(要)(满)(足)(孩)(子)(每)(天)(的)(热)(量)(和)(蛋)(白)(质)(需)(求)(,还)(不)(能)(超)(过)(孩)(子)(身)(体)(所)(能)(承)(受)(的)(苯)(丙)(氨)(酸)(含)(量)(。  “每)(个)(孩)(子)(身)(体)(对)(苯)(丙)(氨)(酸)(的)(耐)(受)(值)(都)(不)(一)(样)(,小)(林)(的)(耐)(受)(值)(现)(在)(控)(制)(在)(300毫)(克)(,每)(次)(吃)(饭)(都)(需)(要)(精)(确)(计)(算)(。吃)(多)(了)(,会)(影)(响)(智)(力)(,吃)(少)(了)(又)(影)(响)(身)(体)(发)(育)(。”小)(林)(母)(亲)(表)(示)(。  而)(日)(复)(一)(日)(的)(付)(出)(,让)(小)(林)(母)(亲)(还)(练)(就)(了)(一)(项)(“绝)(技)(”,随)(便)(说)(一)(种)(食)(物)(,她)(都)(能)(很)(快)(回)(答)(出)(含)(有)(多)(少)(蛋)(白)(质)(和)(苯)(丙)(氨)(酸)(。  记)(者)(在)(采)(访)(中)(发)(现)(,每)(一)(个)(苯)(丙)(酮)(尿)(症)(患)(儿)(的)(家)(中)(都)(有)(一)(件)(必)(不)(可)(少)(的)(物)(品)(,那)(就)(是)(电)(子)(称)(。孩)(子)(们)(的)(父)(母)(每)(天)(都)(在)(和)(食)(物)(“赛)(跑)(”,为)(孩)(子)(“抢)(救)(”智)(力)(。  为)(了)(不)(影)(响)(孩)(子)(的)(成)(长)(,仅)(八)(个)(月)(大)(的)(小)(涛)((化)(名)()的)(妈)(妈)(也)(早)(早)(准)(备)(了)(电)(子)(称)(,对)(孩)(子)(所)(有)(食)(物)(的)(蛋)(白)(质)(含)(量)(进)(行)(绝)(对)(控)(制)(。“为)(了)(更)(好)(照)(顾)(孩)(子)(,我)(们)(只)(能)(这)(样)(做)(。”小)(涛)(母)(亲)(说)(。  “长)(大)(了)(就)(好)(了)(,我)(能)(骗)(他)(一)(辈)(子)(吗)(”  苯)(丙)(酮)(尿)(症)(作)(为)(7000多)(种)(罕)(见)(病)(中)(为)(数)(不)(多)(可)(以)(治)(疗)(的)(一)(种)(,虽)(然)(步)(履)(维)(艰)(,但)(很)(多)(家)(长)(依)(然)(满)(怀)(希)(望)(。“虽)(然)(得)(了)(罕)(见)(病)(,但)(我)(们)(还)(会)(坚)(强)(的)(生)(活)(下)(去)(,为)(了)(孩)(子)(。”一)(位)(患)(儿)(家)(长)(说)(。  因)(为)(不)(想)(让)(孩)(子)(成)(长)(受)(到)(影)(响)(,一)(些)(家)(长)(不)(得)(不)(用)(一)(些)(“善)(意)(的)(谎)(言)(”来)(隐)(瞒)(真)(相)(。“有)(一)(次)(看)(电)(视)(小)(朋)(友)(们)(都)(在)(说)(自)(己)(的)(梦)(想)(,儿)(子)(突)(然)(说)(也)(想)(赶)(紧)(长)(大)(,因)(为)(长)(大)(就)(可)(以)(吃)(爸)(爸)(做)(的)(饭)(了)(。”为)(了)(哄)(孩)(子)(吃)(饭)(,小)(付)((化)(名)()的)(父)(亲)(编)(下)(了)(这)(个)(谎)(言)(。因)(为)(药)(物)(和)(特)(食)(昂)(贵)(,很)(多)(家)(长)(不)(得)(不)(放)(弃)(治)(疗)(,眼)(看)(孩)(子)(慢)(慢)(变)(傻)(直)(至)(死)(亡)(,他)(们)(痛)(苦)(地)(笑)(着)(陪)(伴)(着)(孩)(子)(。  而)(不)(足)(一)(周)(岁)(的)(鹏)(鹏)((化)(名)()更)(是)(被)(“藏)(得)(严)(严)(实)(实)(”,因)(为)(孩)(子)(爷)(爷)(患)(有)(心)(脏)(病)(,所)(以)(其)(父)(母)(并)(没)(有)(把)(孩)(子)(患)(病)(的)(消)(息)(告)(诉)(他)(。“爷)(爷)(本)(来)(身)(体)(就)(不)(好)(,在)(家)(给)(孩)(子)(喂)(饭)(时)(,也)(不)(能)(表)(现)(得)(太)(明)(显)(。好)(在)(孩)(子)(还)(小)(,不)(会)(要)(东)(西)(吃)(,喂)(什)(么)(就)(吃)(什)(么)(,其)(他)(亲)(友)(更)(是)(不)(知)(道)(。”鹏)(鹏)(母)(亲)(说)(。  “虽)(然)(步)(履)(艰)(难)(,但)(我)(也)(会)(拯)(救)(你)(”  虽)(然)(也)(有)(一)(些)(救)(助)(项)(目)(在)(各)(地)(陆)(续)(开)(展)(,然)(而)(由)(于)(缺)(少)(完)(善)(的)(罕)(见)(病)(救)(助)(体)(系)(,以)(及)(社)(会)(广)(泛)(存)(在)(的)(对)(罕)(见)(病)(的)(忽)(略)(,给)(这)(群)(孩)(子)(的)(生)(活)(带)(来)(很)(大)(困)(难)(。  据)(了)(解)(,世)(界)(卫)(生)(组)(织)(将)(罕)(见)(病)(定)(义)(为)(,患)(病)(人)(数)(占)(总)(人)(口)(的)(0.065%~0.1%之)(间)(的)(疾)(病)(或)(病)(变)(。约)(有)(80%的)(罕)(见)(病)(由)(于)(遗)(传)(缺)(陷)(引)(起)(。中)(国)(人)(口)(基)(数)(大)(,按)(比)(例)(推)(算)(,各)(类)(罕)(见)(病)(患)(者)(人)(数)(众)(多)(。  然)(而)(,我)(国)(目)(前)(并)(没)(有)(一)(部)(完)(整)(的)(关)(于)(罕)(见)(病)(的)(法)(案)(,为)(罕)(见)(病)(儿)(童)(救)(助)(设)(置)(了)(障)(碍)(。“没)(有)(统)(一)(的)(标)(准)(,各)(地)(的)(救)(助)(也)(就)(零)(零)(散)(散)(。一)(些)(项)(目)(虽)(然)(给)(这)(个)(群)(体)(带)(来)(了)(好)(处)(,但)(总)(归)(缺)(少)(法)(律)(上)(的)(支)(持)(。”长)(期)(从)(事)(罕)(见)(病)(研)(究)(治)(疗)(的)(淄)(博)(市)(妇)(幼)(保)(健)(院)(医)(生)(董)(丽)(萍)(表)(示)(。  而)(对)(于)(罕)(见)(病)(的)(宣)(传)(、罕)(见)(病)(治)(疗)(药)(物)(、食)(品)(的)(研)(发)(等)(就)(更)(显)(的)(杯)(水)(车)(薪)(,治)(疗)(苯)(丙)(酮)(尿)(症)(的)(特)(食)(全)(国)(仅)(有)(几)(家)(生)(产)(,药)(物)(更)(多)(需)(从)(国)(外)(通)(过)(私)(人)(渠)(道)(进)(口)(。  “虽)(然)(每)(年)(要)(花)(掉)(数)(万)(元)(的)(治)(疗)(费)(用)(,但)(我)(们)(仍)(然)(会)(坚)(持)(,再)(苦)(再)(难)(,我)(们)(也)(会)(拯)(救)(我)(们)(的)(孩)(子)(。”说)(到)(这)(里)(,患)(儿)(家)(长)(李)(华)((化)(名)()已)(泣)(不)(成)(声)(。)!

作者:【龙虎和代理】


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