Yuchen’s story (as told by his mother)

再过两天儿子就满十岁了,十年了,他陪伴在我身边已经十个年头了,这十年来,我不知道为他掉了多少的眼泪,但我仍然很坚定的说,他是我最好的孩子,虽然他的身体状况使我感觉到伤心,但拥有他是我今生最大的快乐。肌无力,我以前从来没有听说过这种病,但它却无情的出现在我儿子的身上,出生后三天因为吸入性肺炎而转院到北大医院的时候,大夫发现了他肌无力的状况……记得我剖腹产7天出院的第一件事情就是赶去北大医院看他,看到他耷拉的手腕,张开的小手,我觉得我的呼吸都要停滞了,我崩溃的蹲到了地上,嚎啕大哭。但我仍然说出了那样一句话:“无论如何,我都要把他养大,要永远和他在一起。”那是我最本能的心声,这种心声一直支撑着我,我想以后仍然会支撑着我走下去,它会成为我生活的信条。从知道孩子有病的那一天开始,我翻阅了很多相关的书籍,也上网去大量的查阅相关的资料。在大量的翻阅资料后,我觉得我得了强迫症,我惧怕再看到类似肌肉病的资料,我每天晚上总是抱着孩子哭。孩子3个月的时候,我带他第二次住进北大医院检查肌肉病,肌酸激酶偏高一点,肌电图显示拇指肌源性损害,听着孩子做肌电图时疯狂的哭闹声,我觉得自己也快疯掉了……3个月会竖头和翻身了,4个月会抓挠了,6个月会坐了,会再见,会欢迎,一切呈现出良好的状态,我也开始在大夫的建议下带孩子进行康复。同时2个月做一次测评,他的社交能力和智力发育一直超越同龄的孩子。10个月的时候,他会有意识的叫爸爸了,可是一直不会爬,我在大夫的指导下每天都耐心的训练他,一岁2个月,他开始会爬了,一岁6个月,会独自走路了。虽然不很明显,但仍然能看的出来走路有些晃悠。我依然在大夫的指导下对他进行康复治疗,每天练习走路和上下台阶……2岁的那年冬天,发现一直再好转的他似乎退步了,没走多久就觉得累。3岁那年的冬天,觉得走路又比头一年短了一些,我们又第三次住进北大医院检查,肌酸激酶还是稍微偏高一点,肌电图显示神经源性损害,这期间进行了代谢筛查,没发现问题。这次住院还是没发现具体的病因。4岁半的时候,因为爷爷看护不当,他生长板骨折了,也就从那一天开始,儿子彻底不会独自走路了,这之前,他还可以独自从卧室走到客厅,还可以扶着墙迈上卫生间的台阶。骨折后石膏一直打到了大腿根,等石膏拆除后,又发现髋关节脱位了……他开始惧怕走路,彻底坐到了轮椅上……

5岁半的时候,孩子上小学了,他的成绩出奇得好,数学、语文、外语总是班里的第一名,他喜欢上了学习,总是坐在书桌前,看书、写字……运动的减少和坐着的时候太多,导致他的腿不直了。虽然我也经常帮他按腿,但仍然没把他的腿弄直。他的手指倒是越来越灵活,虽然还是劲不大,但字写得越来越漂亮。也许是因为我经常按摩脊柱的缘故,脊柱侧弯的情况没有发生……

一个月前,我们的主治大夫熊晖找到我说,孩子的病确诊了,是先天肌营养不良。是VI型胶原蛋白的问题,大夫很清楚的告诉了我这个病的情况,那一天,我大哭了一场,哭过之后,我想了很久。这么多年来我一直在很努力的教育他培养他,也一直在努力的使他的心灵健康的成长,努力让他成为一个有用的人。即使确诊了,即使还没有治疗的方法,即使病情会随时进展。我也不该灰心失望。中国有一句俗语叫“人定胜天”。努力吧!我相信总有一天大夫会帮助我们战胜这个疾病,我和儿子会充满了希望耐心的去等待。即使真的永远也治不好,我们也要努力使我们走过的每一天都阳光灿烂……

My son will be 10 years old in two days. He has been accompanying me for ten years. In these ten years, I cannot tell exactly how many times I have cried for him, but I can still firmly say that he is my best child. Although his health condition makes me feel sad, but having him with me is my greatest pleasure in my life.Muscular dystrophy, I had never heard of this disease before, but it happens to my son ruthlessly. Three days after he was born, he was transferred to the Peking University First Hospital (PUFH) because of aspiration pneumonia, doctors found his symptom of muscular dystrophy  ……I still remember when I left hospital seven days after the Caesarean birth, the first thing I did was going to the PUFH to see my new borne baby. At the sight of his slouch wrist and feeble palms, I felt my breath nearly stopped. I crashed and squatted on the ground, crying loudly. But I still said:” No matter what happen, I’ll bring him up. I’ll be with him forever.’’ That was my instinctive idea which has supported me until now. I think this idea will continue to support me as the firm belief of my life.From the very day I knew my son’s disease, I have read many concerning books and searched many related materials on Internet. After having done so, I felt I almost suffered from the obsessive-compulsive neurosis. I was afraid to see any material of concerning muscle disease. I wept every night with the baby in my arms. When my son was 3 months old, he was sent to the PUFH for the second time to check muscle disease. His Creatine Kinase index was a bit higher. Electromyogram showed that he suffered from myopathic lesion in the thumbs. Hearing the crazy crying from my son while he was taking electromyogram exam, I felt I was going to be mad……My son was able to lift his head and turn his back when he was 3 months old, able to stretch and scratch a month later, and able to weave goodbye and greet welcome when 6 months old. Everything began to take on good condition. I took my son to do some rehabilitation treatment under doctors’ advice, and conducted assessments every two months. His social ability and intellectual development always exceeded children of his age. When he was 10 months old, he could utter “daddy” consciously, but he could not crawl like other babies. I trained him patiently under doctors’ guidance. Two months after one year, he learned how to crawl. Half past one year old, he could walk by himself. His walking was somehow unsteady, though not very obviously. I still took him for rehabilitation under doctors’ guidance, let him practice walking and going upstairs and downstairs……In the winter when he was two years old, it seemed that his recovery trend had slowed down or even reversed. He would feel tired after walking a short distance. In the following winter, it seemed that he walked even shorter than the previous year. He was sent to the PUFH for the third time. His Creatine Kinase index was still a bit high. Electromyogram indicated some neurogenic damage. During this period, he was given a metabolism screening check, through which no problems were found. Once again, no definite cause of his disease could be found.At the age of half past four, he had his broken leg bone because of improper care from his grandfather. From the very day, he could no longer walk by himself. Previously, he used to be able to walk from the bedroom to the living room all by himself, also could he step on the small terrace in the bathroom while relying on support from wall. After this bone fracture, his whole leg was covered with a plaster cast. When the plaster cast was removed ……He was afraid to walk again and was seated on a wheelchair thoroughly.

At the age of half past five, he began to go to school. His achievement was amazingly excellent. He has always being No.1 in such subjects as Math, Chinese and English in his class. He began to enjoy studying and always sit in front of table, reading and writing ……Due to less exercises and too much time of sitting, his legs were no longer straight. Although I often massage his legs, I was unable to make his legs straight again. But his fingers have become more and more flexible. The strength of his hands was still very small, but his handwriting was more and more beautiful. Maybe thanks to my massaging his backbone, the condition of spinal side curve has not occurred.

A month ago, XIONG Hui, our attending doctor, told me that my son’s disease was proved to be congenital muscular dystrophy, as something went wrong with type VI collagen within his body. The doctor talked to me all about this disease clearly. On that day, I cried unrestrainedly. After crying, I thought for a long time. During these years, I have always tried hard to bring him up and cultivate him, and at the same time made him grow healthy mentally and eventually become an independent man. Though his disease has been confirmed and there is still no effective therapy and his disease never stop developing, I will never give up. There is a saying in China, “man will triumph over his fate”. Try hard! I am sure that the day will surely come when we finally get rid of this disease with doctors’ help. My son and I are waiting patiently for this day, full of hope. Even if he cannot be cured, we should try our best to make every day we live full of brilliant sunshine ……

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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