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从病人成为暑期实习生

三年前的许安生(Anson Hui)和十二年级的其他学生一样,刚刚完成本科的报名程序。但在大多数外人眼里,他应该走的是截然不同的道路。

非凡的音乐才能

许安生六岁便开始跟着老师Dr.Sofia Moshevich学琴,在七岁半时他通过了钢琴八级考试,展现了不寻常的天赋。八岁时,他基本上右手弹三次,左手弹三次之后,就可以用双手弹出全新的八级乐章,很多乐曲也是听过几次或者看了几遍乐谱就可以弹奏。从九岁第一次参加钢琴比赛起,许安生就不曾败过,他战胜过的对手来自世界各地,年龄由19到34岁不等。2014年,他一举赢下了美国印第安纳大学钢琴大赛大奖。

虽然在外人眼中,许安生是11岁就能与乐团合奏大师级别乐章–莫扎特D小调第20号钢琴协奏曲的天才少年。但是小时候他却因为各方面发育过慢,被学校建议送到特殊学校。

第一个华人GSD一型患者

其实,安生在出生至三个月大时一切正常,在三个月后出现生长缓慢的迹象,到了两岁时症状更明显,当时的他面庞肿胀,四肢却干瘦,当时妈妈还不知道这是肝醣储积症(GSD)的征状。

两岁到三岁整整一年的时间里,安生身体只有20磅重,走路基本没有问题,但他却没有力气跳和跑。家人带他看尽各种专科,直至两岁九个月大时才确诊他患有GSD一型。他必须严格地按照一天五次的标准食用玉米生粉,少吃一顿就可能出现低血醣症状,随时昏迷,甚至威胁到生命。

关于安生患有肝醣储积症(GSD)

在加拿大,当儿童出现难以解释的低血糖水平、肝肿大或生长迟缓时,都会被转介到SickKids病童医院的代谢遗传学中心。SickKids大约接纳了三、四十名GSD病人,平均每年会有一至两个新的患者入院。GSD一型是一种罕见的先天遗传代谢疾病,患者因为体内肝醣代谢过程中出现酵素,导致身体无法正常代谢肝醣。GSD的患者却不能将储存的肝糖转化成葡萄糖,体内血糖含量容易跌至危险值,此时肾脏又会因为分解出其他废物而受到损害。

GSD一型不容易确诊,尤其是在幼儿一岁前,因为婴儿喂食频繁,两至三小时就进食一次,血糖不容易出现跌倒警戒值的水平。但随着孩子长大,每顿饭相隔期延长,血糖水平容易骤然下降,轻微时会出现软弱无力,情绪不稳的征症,严重则可导致昏迷,造成脑部受损,长期下来将影响儿童发育。

玉米粉和钢琴

安生这十多年来的生活关系最紧密的两样东西是玉米生粉和钢琴,每天定点食用玉米生粉让他保持健康,弹钢琴让他重拾了信心。当然他也在学习与这两样东西相处十几年的过程中养成了很重要的品质:自律和坚持

GSD一型的主要医治方法就是频繁进食以维持体内血糖水平。

白天,安生除了正餐外,还需要每两小时以玉米生粉冲泡开水饮用,一日五次。因为未煮过的玉米生粉水不易被消化,可以有效维持血糖值。

夜间,则一般通过用电泵将特制糖浆输入胃喉,维持睡眠状态下体内的血糖值。

小学阶段,因为安生不适应喝玉米生粉水,妈妈许萍伽每天会去学校6次给他打糖浆入胃喉。而为了帮助从小发育慢于同龄孩子的安生建立自信,妈妈许萍伽开始鼓励他学琴。曾经被认为发展迟缓的安生,也终于在五、六岁时开始茁壮成长,妈妈形容他像突然开窍一样,说话越来越多,六岁便显现出不俗的琴技

成长的地方SickKids病童医院

在安生被确诊GSD后就被立即转到SickKids病童医院,他在这里接受治疗也在这里成长。

妈妈许萍伽还记得最初到达SickKids那天,早早就有一队医疗人员在等候他们,入院后,院方立马上做了肝脏切片检查去核实GSD 的类型,一个月后,安生接受了手术。

自安生两岁九个月被确诊,SickKids病童医院一直为他提供着越来越完善的治疗方案。SickKids病童医院负责监察安生的身体状况,安生负责让动人美好的音乐流动在更多人的心中。

许萍伽很感激SickKids医护人员的对安生特别的支持,:“他们就像家人一样,对小朋友和家长都很尊重和关心。”她也很认同SickKids病童医院对病患考虑的贴心度。最近,SickKids的一个医护人员邀请她以过来人的身份开解一位新病患的妈妈,许萍伽很感动:“这不是医护人员的份内事,但是他们仍然会为病人以及家属着想,很有人情味。”

人生的轉折點

安生的GSD虽然能靠注意饮食控制住,但肝脏上却查出了肿瘤,为了避免转成恶性,需要进行肝脏移植手术。妈妈对此非常担心,安生反倒安慰妈妈,Schulze也对换肝手术持乐观态度。

SickKids的先进技术和历来的成功率都很值得信赖,安生的手术很顺利了,现在的他也需要再依靠G管和特殊饮食。

安生原来师承印弟安纳本科Jacob音乐学院的钢琴家Edward Auer,他曾经的打算是想到这所音乐名校深造,但是在SickKids的经历令他萌生了对医学的兴趣。“安生最喜欢去医院看病,因为可以问很多问题。有一次去看病,他问护士问题,护士答不了,就请了一个血科的主诊医生来跟他谈,两人相谈甚欢,畅谈了一个小时。”妈妈说,在其他医院,患者很少能有这样和医生聊天机会。

2018年,安生凭借在学校全A的成绩通过了学校的申请,获得了暑期在SickKids实验室内实习的机会。他心底里有一个小小的梦想——成为一名医生救助更多的病人。

许安生的故事带给我们的不仅仅是对生命的思考,更鼓励着每一个相信奇迹的医生和病人:从一个每天必须按时食用玉米生粉水的天才钢琴少年,到一名励志医学救人的SickKids病童医院的暑期实习生,他鼓励着每一个人在逆境中乐观向上,激发我们的潜能。


2019-11-06T11:30:47-05:00

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