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体重18公斤北航新生报到!立志做中国“霍金”的邢益凡,加油! Disability no bar to student obtaining top marks, admission to university

中国日报网 2021-09-07 08:00

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9月2日,北京航空航天大学迎来了第一名2021级本科新生——邢益凡。他在父母的陪伴下,提前入住校园爱心宿舍。

邢益凡和父母。图源:北京航空航天大学微博


邢益凡今年18岁,体重却仅有18公斤。6个月大时,他被确诊为LAMA2-相关先天性肌营养不良(渐冻症的一种)。


他凭借顽强的意志,常年与病魔作斗争,今年高考,他以645分的成绩考入北京航空航天大学。


Xing Yifan and his parents were thrilled to learn that he had been admitted to Beihang University with a score of 645 out of a possible 750 points in this year's national college entrance examination, or gaokao.
在得知自己以645分被北京航空航天大学录取时,邢益凡和他的父母都非常激动。

图源:人民网微博


It would take most high school graduates great effort to score that high.
大部分高考生需要付出巨大的努力才能取得如此优异的成绩。


But the challenge for 18-year-old Xing was greater, as he was born with congenital muscular dystrophy, or CMD, a group of disorders characterized by muscle weakness and problems with the eyes and central nervous system.
而这对于18岁的邢益凡来说难度更大。因为他患有先天性肌营养不良,这种疾病表现为肌无力、视觉和中枢神经系统问题等症状。


Born in Jilin city, Jilin province, in 2003, Xing's family were delighted with his arrival and did not notice anything wrong until three months later.
2003年,邢益凡出生于吉林省吉林市,他的降生让家人们感到欣喜,直到三个月后他们才注意到异常。


"When we took him for photos at a studio, the photographer told us our son wasn't able to do the same things other babies his age could," said Xing Dacheng, Xing Yifan's father.
邢益凡的父亲邢大成说:“当时我们在一家影楼给他拍照,摄影师说,我们的儿子做不到同龄的婴儿能做到的。”


"He advised us to take him to the hospital for physical examination."
“他建议我们带孩子去医院检查。”


The family spent a month visiting different hospitals in Jilin city and Changchun, the provincial capital, but were unable to get a definitive diagnosis.
邢家人花了一个月的时间辗转吉林市和长春市的医院,但未能得到明确诊断。


2004年,6个月大的邢益凡在北大医院儿科确诊为LAMA2-相关先天性肌营养不良,这是一种罕见的因LAMA2基因突变导致的先天性肌营养不良亚型。


After the Spring Festival in 2004, the Xing couple took him to Beijing for treatment, and he was finally diagnosed with CMD at Peking University First Hospital.
2004年春节后,邢大成夫妇带儿子到北京治疗,最终在北京大学第一医院确诊为先天性肌营养不良。


"Although we were psychologically prepared, we never imagined our son would grow up with such a condition," Xing Dacheng said. "Furthermore, the doctor told us there was no effective form of treatment."
邢大成说:“尽管有心理准备,但我们从未想到儿子会这样长大。医生告诉我们没有有效的治疗方法。”


When relatives and friends heard the news, they advised the couple to have another baby, but they were determined to pour all their love and care into their son.
亲友们得知这个消息后,劝邢大成夫妇再生一个孩子,但他们决心把所有的爱和关怀都倾注到邢益凡身上。

图源:北京航空航天大学微博

 

“折翼”天使的逆袭人生


在父母眼中,邢益凡就是降临到他们身边的天使,虽然他的“翅膀”折断了,但这不该成为放弃的理由。他们给邢益凡起了个小名,叫“毛毛”,希望他像毛毛草一样,顽强成长。


"Yifan is an angel who came to our family," the father said. "He might have broken wings, but we will never give him up."
邢父说:“益凡是降临在我们家的天使,他的翅膀可能折断了,但我们永远不会放弃他。”


Over the following years, Xing Yifan's parents took him for rehabilitation and regular examinations at local hospitals, but to little effect.
在接下来的几年里,邢益凡的父母带他去当地医院进行康复治疗和定期检查,但收效甚微。


因为患病,邢益凡的肌肉几乎不能生长。无力的骨骼肌无法支撑和保护骨骼,骨骼越生长,肌肉越萎缩,身体所承受的负担就越重。最大运动能力只能独坐,无法像其他孩子一样站立、行走。


The young man's health continued to deteriorate. As a result of his condition, he is unable to grow much muscle, so his skeleton suffers from a lack of support and protection.
邢益凡的健康状况持续恶化。由于患病,他的肌肉几乎不能生长,骨骼缺乏支撑和保护。

"He has never walked independently and can only sit against a support," said Xing Dacheng.
邢大成说:“他从来没有独立行走过,只能靠着支架坐着。”

图源:中国日报


由于严重脊柱畸形,邢益凡一堂课最多能坚持坐着听课30分钟,剩下15分钟只能躺着听课,全靠大脑想象老师讲的知识。翻书时,他做不到用一只手来完成。


由于颈部肌肉的退化,邢益凡的头几乎不能自己转动。平时上课,他只能用下巴撑在桌上支着头,眼睛也只能扫视到书本的一半页面。


尽管命运如此残酷和不公,邢益凡却从未低头、退缩,而是勇敢地挑战病魔,在父母的陪伴下坚强地一路“过关斩将”,创造了一次又一次奇迹努力活出生命的精彩。


中考时,邢益凡以615分的成绩考入吉林一中,考出了学校最好的中考成绩。

图源:人民网微博


Xing Yifan got the highest score in his school for the senior high school entrance examination in 2018. To prepare for gaokao, he studied even harder from the day he started at Jilin No 1 Senior High School.
邢益凡在2018年中考中获得全校最高分。为了备战高考,进入吉林一中后他更加努力地学习。


用仅剩一点儿肌肉力量的双手,邢益凡完成了一张又一张试卷,一天最多做了20多张,经常做到凌晨一两点,每天疲倦到沾床就能睡着。


"He rarely went to bed before the midnight, especially in the third year," his father said. "To avoid creating trouble for others, he didn't drink much water at school to reduce his need to go to the toilet."
邢父说:“他很少在12点前睡觉,尤其到了高三。为了避免给别人添麻烦,他在学校不太喝水,这样就可以少上厕所。”


邢益凡的骨头非常脆弱,稍有不慎就有折断的危险。备战高考期间,邢益凡在准备上床睡觉时不慎右臂肩关节骨折。


In September last year, Xing Yifan suffered a fracture to his right shoulder and had to stay at home to recover.
去年9月,邢益凡右肩骨折,不得不在家中修养。

A camera was set up in his classroom to allow him to follow lessons on his computer at home.
教室里安装了一台摄像机,能让他在家里用电脑跟大家一起听课。

After three months, he returned, and to his teachers' surprise, he had improved instead of falling behind his classmates.
三个月后,邢益凡回到学校,令老师们惊讶的是,他不但没有落后,反而进步了。


在父母的陪伴和鼓励下,在学校老师们和同学们的帮助和支持下,邢益凡如愿参加并顺利完成了2021年高考。他以645分的好成绩被北航工科试验班(信息类)录取。


爱心温暖,助力航行


今年6月25日的招生见面会上,当邢益凡父亲将资料递交给北航招生办的老师,并详细介绍儿子的病情和学习情况后,招生老师的回答特别暖心:“最难的事情你们已经做完了,剩下的事情就交给我们了。”


9月2日,在北大医院罕见病中心-神经肌肉病多学科综合诊疗(MDT)门诊,来自多个科室的专家为“老患者”邢益凡展开联合义诊,全面评估其身体状况。

图源:北京航空航天大学微博


义诊后,在北航师生的陪同下,邢益凡来到北航校园,住进位于一楼、出入方便、有两张床和独立卫浴的爱心宿舍,邢益凡的妈妈也将住在这里陪读、照顾他。

图源:北京航空航天大学微博

 

图源:北京航空航天大学微博

 


从小时候起邢益凡就有一个“航天梦”,“太空没重力,我就和别人一样了,可以在太空中自由翱翔”。初中时,他听说了霍金的故事,立志要做中国的“霍金”,用自己的知识改变世界。

"I felt quite inspired when I read the story of British physicist and cosmologist Stephen Hawking. I will continue to study hard at university, and I hope I can be someone like him, who changed the world with his knowledge." 
“我读到英国物理学家和宇宙学家斯蒂芬·霍金的故事时备受鼓舞。我会在大学里继续努力学习,希望我能成为像霍金一样的人,用知识改变世界。”


生活以痛吻我,我却报之以歌。邢益凡用18年的时间向我们诠释了乐观与坚强的力量,感动和鼓舞了无数人,网友们纷纷留言为邢益凡送去祝福:

 


命运最怕勇敢的人,6月,他交出了满意的高考答卷。9月,他将在北航开启人生崭新的诗篇。


邢益凡,加油!

 


综合:中国日报网,北京日报,吉林共青团,北京航空航天大学
编辑:董静

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