女孩患上怪病PKU只能吃特制 nike ken griffey jr shoe

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　　一双明亮的大眼睛，胖嘟嘟的脸蛋，迷人的笑容，眼前的女孩是个小美女。然而，她却是一个PKU患者。P KU即苯丙酮尿症,air griffey，发病率在七千分之一左右。昨日，在许昌市区，记者见到了不幸患病的郎怡晴。
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　　乖乖女患上奇怪病
　　“这是孩子吃的特殊食品，都是从外地邮购的。”昨日上午，在许昌市区文峰路北段一间20多平方米大的小 屋内，李朋娜坐到一个低矮的凳子上，将一个纸箱子拉到身旁,dunk women boots，从里面拿出一袋子面条和大米。
　　31岁的李朋娜看上去有些憔悴，说起女儿的事，她抹起了眼泪。
　　她和丈夫郎晓伟家住襄城县丁营乡，郎怡晴是他们唯一的一个女儿。女儿出生后不久，她就发现孩子的头发金 黄，小便有一种鼠尿的臭味，非常刺鼻。两岁时，女儿才学会走路，但无法说话,discount nike air max 24/7，智力与同龄人相比偏低。担心孩子身体发育有问题，夫妇俩带着孩子先后到许昌、郑州等地四处求医，医生怀疑 孩子患的是PKU疾病，但一直没有确诊。去年，经山东省济南市妇幼保健院确诊，4岁的郎怡晴是经典型PKU 患者,April careers report-Redundancy charge dips。
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　　昂贵“特食”压垮父母
　　今年4月，为给女儿寻找一家收费便宜的康复学校，李朋娜夫妇带着孩子从襄城县农村来到许昌 市区,cheap griffeys，在文峰路北段租了一间民房住下，将女儿送到附近一家康复学校。“许昌离家近些，郑州也有康复学校，离家远 不说，收费也比许昌贵。”李朋娜说。
　　“孩子不能吃鸡鸭鱼肉、高蛋白食品，鸡蛋、牛奶、豆制品，都不能吃。”李朋娜拿出女儿的特殊食品说，这 些是特制面粉、蛋白粉、特制面条、特制大米等低蛋白食品,ken griffey sneakers。
　　她介绍,ken griffey shoes 2011，一袋1公斤重的面粉，30多元；一袋1公斤重的大米48元，一袋450克的蛋白粉，300多元。这些让女 儿吃的特食，一个月的花费至少2000多元,air max 24/7 shoes，加上康复学校1000多元的学费，孩子一个月就要花掉3000多元,July job opportunities survey- Having been fired fee dips。“这3000多元还不包括租房等其他生活费用。”李朋娜说，自己没有工作，丈夫以前给人家送水，一个月挣 800多元。家里就几亩地，全家靠这点收入，根本无法承担抚养女儿的沉重经济负担。
　　“病查出来了，钱也花光了，我的泪也哭干了。”李朋娜说，“受不了！随着孩子年龄的增长，吃得更多，给 孩子治病吧，家里承受不了，不治吧，孩子是条生命，又这么可爱。”说到这里，她禁不住抽泣起来 。
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　　大病救助遭遇尴尬
　　“你们没到农村合作医疗机构去问吗，也许能寻求些帮助？”记者问。
　　“去问过。”李朋娜答，农村合作医疗机构工作人员答复说，孩子患的不是住院吃药打针的病，不住院，无法 报销医疗费,air pippen shoes。
　　另外，她和丈夫还为孩子申请过大病救助。但令人失望的是，大病救助机构的工作人员说，由于地方政府没有 将该病列入大病救助的范围，农村合作医疗报销不了,nike ken griffey jr shoes，他们也没有办法。
　　“有时真怕撑不下去，崩溃了！”李朋娜抹着眼泪说。
　　郎怡晴的病情，经当地媒体报道后，引起社会各界的广泛关注。许昌市市长张国晖作出批示，要求有关部门给 予尽可能的支持和帮助,air max 95 boots。
　　10月15日下午，受市长张国晖的委托，许昌市民政局有关负责人带着3000元慰问金来到小怡晴家中， 看望这个可怜的孩子。市民政局有关负责人当即表示，将与襄城县民政部门联系，尽快为他们争取临时救助金，帮 他们解决眼前的困难，同时希望小怡晴安心治病，争取早日康复,ken griffey jr shoes。
　　链接
　　什么是PKU
　　PKU全称苯丙酮尿症，由于体内缺少一种酶，无法和正常人一样代谢蛋白质中的苯丙氨酸，苯丙氨酸在体内 不断积累，就会造成大脑损伤。如果不加控制，孩子就会一天天变傻。一切和蛋白质以及苯丙氨酸有关的食物，都 是此类患者饮食的大忌,ken griffey shoes。人们日常所吃的鸡、鸭、鱼、肉等美味，这些患者都无法享用,air max penny 1 for sale，而只能靠“特食”维持生命。因此，PKU患儿，又被称为“不食人间烟火”的孩子。据了解，该病现在还不能 彻底治愈,nike air foamposite pro，只能靠控制饮食或药物治疗，一般要控制饮食到16岁，终生控制饮食最好,Nike SB Heels。

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