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团员马英龙的故事报道

发表于 2012-9-14 15:36:59 | 查看: 15150| 回复: 25

马英龙需要协助才能从凳子上坐到床上。记者唐爱春摄

　　他叫马英龙，9岁时身体出现肌无力症状，14岁明确诊断患上进行性肌营养不良症(俗称渐冰人)，当时医生称他可能只能活到20岁。如今他已26岁。他每天坚持锻炼。学上网是为了发求助帖，看身患同样疾病的病友如何与疾病抗争，如何在生活中自力更生。
　　8月26日，记者到平果走近马英龙，听他讲述“最想做的3件事”和背后的故事。
　　全身肌肉几乎萎缩
　　马英龙家住平果县望江花园27栋3单元。房子是亲友资助买下的经济适用房。父母特地将他的床靠窗放置，目的是让他多晒太阳多呼吸新鲜空气。马英龙由于患病，全身肌肉萎缩，软绵无力。
　　肌营养不良症，是一组以进行性加重的肌无力和支配运动的肌肉变性为特征的遗传性疾病群。行、坐、站等基本动作，马英龙要付出常人百倍千倍的努力才能完成。相对他而言，“行”和“站”是最易完成的两个动作，但持续时间不能超过15分钟，超过时间身体就没有力气支撑，就会跌倒了。所以更多时候，马英龙选择坐在低矮的方凳上，“挪步”。坐下是最困难的动作，最快要花3分钟，分两步完成，手要扶着墙，侧身、屈身，“倏地”蹲下，坐下。由于没有肌肉支撑衔接，他没法转身，没法控制速度和节奏，所以动作看起来非常生硬。每次洗澡要花至少半个小时，要坐着洗，“洗个澡感觉像锻炼了一天那么累”。尽管如此，马英龙还是每天坚持洗。每次“站”，如果没人抱，马英龙一个人根本没办法。所以他的母亲苏秀华终日在家陪伴他。父亲身体不好，在马英龙9岁至14岁时，父亲抱病5年，家庭贫困才使得马英龙没能及时就医医治。
　　对于马英龙，只有勤加锻炼才能减缓肌肉萎缩速度。对他来说，行、坐、站、按摩肌肉，都是锻炼。
　　出门是他较为奢侈的一件事，出门要上下楼，必须要人抱，不能久坐，无法久站，十分麻烦。他一年最多就出两次门。18岁后走出家门的次数，马英龙用手指都能数得过来，一次办身份证，一次办残疾证，剩下的3次就是去网吧上网发求助帖。(记者赖武慧唐爱春）

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