9月2日，北京航空航天大學(xué)迎來了第一名2021級(jí)本科新生——邢益凡。他在父母的陪伴下，提前入住校園愛心宿舍。

邢益凡今年18歲，體重卻僅有18公斤。6個(gè)月大時(shí)，他被確診為LAMA2-相關(guān)先天性肌營養(yǎng)不良（漸凍癥的一種）。

他憑借頑強(qiáng)的意志，常年與病魔作斗爭，今年高考，他以645分的成績考入北京航空航天大學(xué)。

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學(xué)錄取時(shí)，邢益凡和他的父母都非常激動(dòng)。

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優(yōu)異的成績。

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.
而這對于18歲的邢益凡來說難度更大。因?yàn)樗加邢忍煨约I養(yǎng)不良，這種疾病表現(xiàn)為肌無力、視覺和中樞神經(jīng)系統(tǒng)問題等癥狀。

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，他的降生讓家人們感到欣喜，直到三個(gè)月后他們才注意到異常。

"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.
邢益凡的父親邢大成說：“當(dāng)時(shí)我們在一家影樓給他拍照，攝影師說，我們的兒子做不到同齡的嬰兒能做到的?！?/p>

"He advised us to take him to the hospital for physical examination."
“他建議我們帶孩子去醫(yī)院檢查?！?/p>

The family spent a month visiting different hospitals in Jilin city and Changchun, the provincial capital, but were unable to get a definitive diagnosis.
邢家人花了一個(gè)月的時(shí)間輾轉(zhuǎn)吉林市和長春市的醫(yī)院，但未能得到明確診斷。

2004年，6個(gè)月大的邢益凡在北大醫(yī)院兒科確診為LAMA2-相關(guān)先天性肌營養(yǎng)不良，這是一種罕見的因LAMA2基因突變導(dǎo)致的先天性肌營養(yǎng)不良亞型。

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年春節(jié)后，邢大成夫婦帶兒子到北京治療，最終在北京大學(xué)第一醫(yī)院確診為先天性肌營養(yǎng)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."
邢大成說：“盡管有心理準(zhǔn)備，但我們從未想到兒子會(huì)這樣長大。醫(yī)生告訴我們沒有有效的治療方法。”

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.
親友們得知這個(gè)消息后，勸邢大成夫婦再生一個(gè)孩子，但他們決心把所有的愛和關(guān)懷都傾注到邢益凡身上。

“折翼”天使的逆襲人生

在父母眼中，邢益凡就是降臨到他們身邊的天使，雖然他的“翅膀”折斷了，但這不該成為放棄的理由。他們給邢益凡起了個(gè)小名，叫“毛毛”，希望他像毛毛草一樣，頑強(qiáng)成長。

"Yifan is an angel who came to our family," the father said. "He might have broken wings, but we will never give him up."
邢父說：“益凡是降臨在我們家的天使，他的翅膀可能折斷了，但我們永遠(yuǎn)不會(huì)放棄他?！?/p>

Over the following years, Xing Yifan's parents took him for rehabilitation and regular examinations at local hospitals, but to little effect.
在接下來的幾年里，邢益凡的父母帶他去當(dāng)?shù)蒯t(yī)院進(jìn)行康復(fù)治療和定期檢查，但收效甚微。

因?yàn)榛疾?，邢益凡的肌肉幾乎不能生長。無力的骨骼肌無法支撐和保護(hù)骨骼，骨骼越生長，肌肉越萎縮，身體所承受的負(fù)擔(dān)就越重。最大運(yùn)動(dòng)能力只能獨(dú)坐，無法像其他孩子一樣站立、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.
邢益凡的健康狀況持續(xù)惡化。由于患病，他的肌肉幾乎不能生長，骨骼缺乏支撐和保護(hù)。

"He has never walked independently and can only sit against a support," said Xing Dacheng.
邢大成說：“他從來沒有獨(dú)立行走過，只能靠著支架坐著?！?br>

由于嚴(yán)重脊柱畸形，邢益凡一堂課最多能堅(jiān)持坐著聽課30分鐘，剩下15分鐘只能躺著聽課，全靠大腦想象老師講的知識(shí)。翻書時(shí)，他做不到用一只手來完成。

由于頸部肌肉的退化，邢益凡的頭幾乎不能自己轉(zhuǎn)動(dòng)。平時(shí)上課，他只能用下巴撐在桌上支著頭，眼睛也只能掃視到書本的一半頁面。

盡管命運(yùn)如此殘酷和不公，邢益凡卻從未低頭、退縮，而是勇敢地挑戰(zhàn)病魔，在父母的陪伴下堅(jiān)強(qiáng)地一路“過關(guān)斬將”，創(chuàng)造了一次又一次奇跡努力活出生命的精彩。

中考時(shí)，邢益凡以615分的成績考入吉林一中，考出了學(xué)校最好的中考成績。

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年中考中獲得全校最高分。為了備戰(zhàn)高考，進(jìn)入吉林一中后他更加努力地學(xué)習(xí)。

用僅剩一點(diǎn)兒肌肉力量的雙手，邢益凡完成了一張又一張?jiān)嚲?，一天最多做?0多張，經(jīng)常做到凌晨一兩點(diǎn)，每天疲倦到沾床就能睡著。

"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."
邢父說：“他很少在12點(diǎn)前睡覺，尤其到了高三。為了避免給別人添麻煩，他在學(xué)校不太喝水，這樣就可以少上廁所?！?/p>

邢益凡的骨頭非常脆弱，稍有不慎就有折斷的危險(xiǎn)。備戰(zhàn)高考期間，邢益凡在準(zhǔn)備上床睡覺時(shí)不慎右臂肩關(guān)節(jié)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，不得不在家中修養(yǎng)。

A camera was set up in his classroom to allow him to follow lessons on his computer at home.
教室里安裝了一臺(tái)攝像機(jī)，能讓他在家里用電腦跟大家一起聽課。

After three months, he returned, and to his teachers' surprise, he had improved instead of falling behind his classmates.
三個(gè)月后，邢益凡回到學(xué)校，令老師們驚訝的是，他不但沒有落后，反而進(jìn)步了。

在父母的陪伴和鼓勵(lì)下，在學(xué)校老師們和同學(xué)們的幫助和支持下，邢益凡如愿參加并順利完成了2021年高考。他以645分的好成績被北航工科試驗(yàn)班（信息類）錄取。

愛心溫暖，助力航行


今年6月25日的招生見面會(huì)上，當(dāng)邢益凡父親將資料遞交給北航招生辦的老師，并詳細(xì)介紹兒子的病情和學(xué)習(xí)情況后，招生老師的回答特別暖心：“最難的事情你們已經(jīng)做完了，剩下的事情就交給我們了?！?/p>

9月2日，在北大醫(yī)院罕見病中心-神經(jīng)肌肉病多學(xué)科綜合診療（MDT）門診，來自多個(gè)科室的專家為“老患者”邢益凡展開聯(lián)合義診，全面評(píng)估其身體狀況。

義診后，在北航師生的陪同下，邢益凡來到北航校園，住進(jìn)位于一樓、出入方便、有兩張床和獨(dú)立衛(wèi)浴的愛心宿舍，邢益凡的媽媽也將住在這里陪讀、照顧他。

從小時(shí)候起邢益凡就有一個(gè)“航天夢”，“太空沒重力，我就和別人一樣了，可以在太空中自由翱翔”。初中時(shí)，他聽說了霍金的故事，立志要做中國的“霍金”，用自己的知識(shí)改變世界。

"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." 
“我讀到英國物理學(xué)家和宇宙學(xué)家斯蒂芬·霍金的故事時(shí)備受鼓舞。我會(huì)在大學(xué)里繼續(xù)努力學(xué)習(xí)，希望我能成為像霍金一樣的人，用知識(shí)改變世界?！?/p>

生活以痛吻我，我卻報(bào)之以歌。邢益凡用18年的時(shí)間向我們詮釋了樂觀與堅(jiān)強(qiáng)的力量，感動(dòng)和鼓舞了無數(shù)人，網(wǎng)友們紛紛留言為邢益凡送去祝福：

命運(yùn)最怕勇敢的人，6月，他交出了滿意的高考答卷。9月，他將在北航開啟人生嶄新的詩篇。

邢益凡，加油！

綜合：中國日報(bào)網(wǎng)，北京日報(bào)，吉林共青團(tuán)，北京航空航天大學(xué)
編輯：董靜