出生15天就开始「全身石化变成雕像」,知名女歌手发现到他的状况「出手拯救」!

当娜儿 (Nar Kumari) 第一次抱着儿子拉美什 (Ramesh) 的时候,觉得他是全世界最完美的小男孩,而拉美什也像其他小男婴一样健康。但在娜儿将拉美什带回家后一切都变了,他原本的皮肤开始崩落,取而代之的是又厚又硬的皮肤。   在很长的一段时间内,娜儿跟她的先生南达 (N

June 10, 2016
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当娜儿 (Nar Kumari) 第一次抱着儿子拉美什 (Ramesh) 的时候,觉得他是全世界最完美的小男孩,而拉美什也像其他小男婴一样健康。但在娜儿将拉美什带回家后一切都变了,他原本的皮肤开始崩落,取而代之的是又厚又硬的皮肤。

Constant pain: Ramesh Darji suffers from Ichthyosis, an extremely rare condition which causes his skin to grow quickly and thickly - giving the appearance of having scales, or turning into stone

 

在很长的一段时间内,娜儿跟她的先生南达 (Nanda) 都不知道该怎么办,只能眼睁睁地看着儿子石化。娜儿回忆当时的状况:「他的皮肤变硬而且变成黑色,我们不知道该怎么做,也没人帮我们。」

Suffering: Ramesh's skin first peeled off when he was just 15 days old, and was quickly replaced with thick, black skin which looked like scales, his father Nanda told MailOnline
 
就连在尼泊尔巴格隆的医生也被他们称为是「霉菌感染」的疾病难倒了,跟拉美什的爸妈说他们帮不上忙。
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到了拉美什5岁时,他开始说自己的身体很痛、没办法走路,而且因为石化的关系,他其实也无法好好表达自己的意思。他通常只有在肚子饿或想上厕所时才会说话,其他时候他常常坐着哭泣,但爸妈都不知道他是哪里在痛或是该怎么帮他。

Painful: As he got older, it simply got worse. At five, he complained to his parents of pain all over his body

 

拉美什的外表也吓到了其他小孩,他们通常会尖叫着跑开,让拉美什和家人非常难过。到了6岁的时候,拉美什完全无法走路,所以也无法上学。

Lonely: The 11-year-old has no friends, because the other children are too scared to come near
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最后娜儿跟南达终于知道让拉美什那么痛苦的是一种叫鱼鳞癣的罕见疾病,但他们依然无计可施。

Mystery: It seems even the doctors in the local area were unable to say exactly what was wrong with him 
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南达是一名工人,每个月只赚7000尼泊尔卢比 (约2000台币),而他们求助的好几个医生都跟他们说医疗费用太高了,他们负担不起。

Silence: Ramesh can barely talk, only letting his parents know when he is hungry or needs the bathroom

 

没有钱的两人只能继续在家尽力照顾拉美什。南达每天都要外出工作,娜儿则是待在家,几乎24小时照顾拉美什,也顾不太到其他小孩。

Trapped: The condition left him unable to walk by the age of six, and he was unable to go to school. As a result, he spent all day with his mother, Nar Kumari,  26, while his father went out to work as a labourer

 

但在拉美什的影片被放到社群媒体上后,事情突然有了转机。当时一位尼泊尔歌手珊洁 (Sanjay Shrestha) 收到英国歌手乔丝史东 (Joss Stone) 的信,说想在尼泊尔当地办一场演唱会,并支持当地慈善。当时珊洁正好看到拉美什的影片,就把影片转寄给乔丝史东

Poverty: When they eventually found out what was wrong with their son, Nanda was told the treatment was too expensive to cover with his £44 a month wage, and so they could do nothing but watch him suffer

 

乔丝史东立刻就决定要帮助拉美什,在尼泊尔首都举办的演唱会最后帮拉美什募到£1,375英镑 (约64000台币),但乔丝史东做的不只这样,她在演唱会隔天就拜访拉美什,送他很多礼物,像是玩具熊跟巧克力。

Support: They had almost given up hope, but then a Nepalese musician heard about his plight, and told Joss Stone - who was set to perform in Kathmandu in February - all about his condition

 

珊洁说:「拉美什的困难让乔丝很受震撼,她看到他的时候非常动容。她花了很多时间陪他玩还有互动,拉美什收到礼物也非常高兴。」

Fundraising: Sanjay Shrestha, who happened to be helping the Devon-born singer organise the gig, said she was instantly touched by the story, and helped raise £1,375 during the concert for Ramesh

 

但更大的礼物当然是医疗上的协助,拉美什现在在加德满都医学院接受治疗,这也让娜儿跟南达非常感激,而且拉美什跟他们全家人的生活都因此改善,娜儿现在不用全天候看着拉美什了,医疗团队也有信心他们能改善拉美什的状况。

Delight: She also spent two hours with Ramesh, giving him gifts, including a toy car and chocolate
 
皮肤病助理教授巴特莱医生 (Dr Sabina Bhattrai) 表示:「像拉美什这样的病患受干燥、粗厚、鳞状或易剥落的皮肤所苦,在很多病例中,患者的皮肤会裂开,看起来就像鱼鳞。」

 

医生说拉美什刚被送医的时候情况很糟,医生必须给他抗生素避免感染,然后使用药物、在皮肤上涂滋润产品,然后慢慢将死皮剥掉。超过两个礼拜的过程非常痛苦。

Treatment: Ramesh has since been taken to the capital, where doctors are hopeful they can bring the incurable condition under control - and help him to walk once more
 
医生表示拉美什之所以无法走路也是因为鱼鳞癣拖太久都没有治疗。不过因为拉美什的骨头和肌肉不是天生就虚弱,所以医生相信透过复健后拉美什能够开始走路。

 

南达知道儿子的病情后则表示他非常愧疚,觉得自己没有早点让拉美什接受治疗,是失败的父母。现在他只希望拉美什能再度走路。

Help at last: His parents have been able to do nothing but watch him get worse over the years, until Joss Stone (pictured centre) heard about his plight and decided she could do something to help Ramesh and his family
 
对于乔丝史东的帮忙,南达也非常感激地说:「她做了其他人都做不到的事,我这一生都亏欠她。」拉美什和家人现在也用乔丝史东基金会募到的钱住在加德满都,他们就不必在首都和小村庄之间来回往返了。

来源:Dailymail

希望拉美什能尽快康复!如果你想帮助他的话,也可以到乔丝史东基金会捐款,也把这则感人的故事分享出去吧!

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(往下還有更多精彩文章!)

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