出生15天就開始「全身石化變成雕像」,知名女歌手發現到他的狀況「出手拯救」!

當娜兒 (Nar Kumari) 第一次抱著兒子拉美什 (Ramesh) 的時候,覺得他是全世界最完美的小男孩,而拉美什也像其他小男嬰一樣健康。但在娜兒將拉美什帶回家後一切都變了,他原本的皮膚開始崩落,取而代之的是又厚又硬的皮膚。   在很長的一段時間內,娜兒跟她的先生南達 (N

June 10, 2016
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當娜兒 (Nar Kumari) 第一次抱著兒子拉美什 (Ramesh) 的時候,覺得他是全世界最完美的小男孩,而拉美什也像其他小男嬰一樣健康。但在娜兒將拉美什帶回家後一切都變了,他原本的皮膚開始崩落,取而代之的是又厚又硬的皮膚。

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

 

在很長的一段時間內,娜兒跟她的先生南達 (Nanda) 都不知道該怎麼辦,只能眼睜睜地看著兒子石化。娜兒回憶當時的狀況:「他的皮膚變硬而且變成黑色,我們不知道該怎麼做,也沒人幫我們。」

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
 
就連在尼泊爾巴格隆的醫生也被他們稱為是「黴菌感染」的疾病難倒了,跟拉美什的爸媽說他們幫不上忙。
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到了拉美什5歲時,他開始說自己的身體很痛、沒辦法走路,而且因為石化的關係,他其實也無法好好表達自己的意思。他通常只有在肚子餓或想上廁所時才會說話,其他時候他常常坐著哭泣,但爸媽都不知道他是哪裡在痛或是該怎麼幫他。

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

 

拉美什的外表也嚇到了其他小孩,他們通常會尖叫著跑開,讓拉美什和家人非常難過。到了6歲的時候,拉美什完全無法走路,所以也無法上學。

Lonely: The 11-year-old has no friends, because the other children are too scared to come near
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最後娜兒跟南達終於知道讓拉美什那麼痛苦的是一種叫魚鱗癬的罕見疾病,但他們依然無計可施。

Mystery: It seems even the doctors in the local area were unable to say exactly what was wrong with him 
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南達是一名工人,每個月只賺7000尼泊爾盧比 (約2000台幣),而他們求助的好幾個醫生都跟他們說醫療費用太高了,他們負擔不起。

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

 

沒有錢的兩人只能繼續在家盡力照顧拉美什。南達每天都要外出工作,娜兒則是待在家,幾乎24小時照顧拉美什,也顧不太到其他小孩。

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體上後,事情突然有了轉機。當時一位尼泊爾歌手珊潔 (Sanjay Shrestha) 收到英國歌手喬絲史東 (Joss Stone) 的信,說想在尼泊爾當地辦一場演唱會,並支持當地慈善。當時珊潔正好看到拉美什的影片,就把影片轉寄給喬絲史東

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

 

喬絲史東立刻就決定要幫助拉美什,在尼泊爾首都舉辦的演唱會最後幫拉美什募到£1,375英鎊 (約64000台幣),但喬絲史東做的不只這樣,她在演唱會隔天就拜訪拉美什,送他很多禮物,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

 

珊潔說:「拉美什的困難讓喬絲很受震撼,她看到他的時候非常動容。她花了很多時間陪他玩還有互動,拉美什收到禮物也非常高興。」

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

 

但更大的禮物當然是醫療上的協助,拉美什現在在加德滿都醫學院接受治療,這也讓娜兒跟南達非常感激,而且拉美什跟他們全家人的生活都因此改善,娜兒現在不用全天候看著拉美什了,醫療團隊也有信心他們能改善拉美什的狀況。

Delight: She also spent two hours with Ramesh, giving him gifts, including a toy car and chocolate
 
皮膚病助理教授巴特萊醫生 (Dr Sabina Bhattrai) 表示:「像拉美什這樣的病患受乾燥、粗厚、鱗狀或易剝落的皮膚所苦,在很多病例中,患者的皮膚會裂開,看起來就像魚鱗。」

 

醫生說拉美什剛被送醫的時候情況很糟,醫生必須給他抗生素避免感染,然後使用藥物、在皮膚上塗滋潤產品,然後慢慢將死皮剝掉。超過兩個禮拜的過程非常痛苦。

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
 
醫生表示拉美什之所以無法走路也是因為魚鱗癬拖太久都沒有治療。不過因為拉美什的骨頭和肌肉不是天生就虛弱,所以醫生相信透過復健後拉美什能夠開始走路。

 

南達知道兒子的病情後則表示他非常愧疚,覺得自己沒有早點讓拉美什接受治療,是失敗的父母。現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
 
對於喬絲史東的幫忙,南達也非常感激地說:「她做了其他人都做不到的事,我這一生都虧欠她。」拉美什和家人現在也用喬絲史東基金會募到的錢住在加德滿都,他們就不必在首都和小村莊之間來回往返了。

來源:Dailymail

希望拉美什能盡快康復!如果你想幫助他的話,也可以到喬絲史東基金會捐款,也把這則感人的故事分享出去吧!

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