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双语:美国女孩患早衰症貌似老人 故事励志感人

美国女孩患早衰症貌似老人,视频浏览过亿故事励志感人 _双语新闻

Despite suffering from an extremely rare ageing condition, self-confessed "diva" and YouTube star Adalia Rose has racked up more than 170 million views for her bubbly personality and inspiring content.


  阿达利娅.罗斯尽管患有一种极其罕见的衰老病症,但凭借活泼开朗的性格和励志的故事,她的YouTube账号已经有了1.7亿多的浏览量,她自认为自己是“天后”

  The 11-year-old internet sensation was diagnosed with Hutchinson-Gilford progeria syndrome (a genetic condition which affects less than 500 children around the world) as a baby... but has not let it stop her from documenting her fun-filled life online.

  这位11岁的网络红人在婴儿时期就被诊断出患有哈钦森-吉尔福德早衰症(患有该遗传病的儿童全世界不到500名)。但尽管如此,她已然继续在网上记录自己充满乐趣的生活。

  Famous for her beauty tutorials and vlogs, the American pre-teen often shares her day-to-day experience with the rare condition with her 1.5 million YouTube subscribers.

  这位美国少女以她的美容教程和视频博客而闻名,她经常和自己的150万YouTube粉丝分享她的日常生活。

  Along with rapid premature ageing, Adalia has also suffered from hair loss, lack of body fat, prominent veins, a high pitched voice and severe stiffness in her joints.

  伴随着快速的早衰,阿达利娅开始遭受脱发、体脂不足、静脉突出、音调高亢和关节僵硬带来的的痛苦。

  First diagnosed at just three months old, Adalia’s mother Natalia Pallante, 29, said doctors first noticed something was wrong within the first four weeks of the little girl’s life.

  阿达利娅的母亲娜塔莉亚.帕兰特现年29岁,她说,阿达利娅在3个月大的时候就被确诊了。医生们在她出生后的四周内就发现了不对劲。

  Concerned about Adalia’s lack of "growth", the then single mum also recalls how the "skin on her tummy was really tight and just different looking."

  考虑到阿达利娅没有“发育”,当时还是单身的母亲回忆说,“她肚子上的皮肤的确很紧,但就是看起来不大正常。”

  Two months later, Natalia was left devastated by the life-changing diagnosis and remembers how "it was just her and I and I honestly felt lost."

  两个月后,娜塔莉亚被这个改变人生的诊断弄得心力交瘁,她还记得“当时只有她和我,我真的感到非常失落。”

  It was also around this time that Adalia "started losing her hair and her little veins started showing up more and her skin started thinning out a lot more."

  也正是在那个时候,阿达利娅“开始脱发,她的小血管开始增多,皮肤也开始变薄。”

  Sufferers of this extremely rare condition (caused by a abnormal gene protein) are also at an increased risk of dwarfism.

  患有这种极其罕见的疾病(由异常的基因蛋白引起)的人患侏儒症的风险也比正常人高。

  However in the 11 years since that life-changing moment, Adalia and her family (who are based in Texas) instead choose to live "day by day" and don’t discuss the condition’s 13 year life expectancy.

  然而,在被确诊11年后,阿黛丽娅和她的家人(住在德克萨斯州)决定活在当下,就算自己最多只能活13岁,她们也决定不再考虑这个问题了。

  Now an older sister to three little brothers, Adalia styles out her lack of natural hair with her signature colourful wigs.

  阿黛丽娅现在是三个弟弟的姐姐,由于没有长头发,她戴着标志性的彩色假发,而且梳得很有型。

  And like any other social media obsessed pre-teen, Adalia and her mother first created her channel in 2012 for "giggles"... and have been amazed by the response they’re received.

  和其他喜欢社交媒体的青少年一样,阿黛丽娅和她的母亲在2012年创建了她的“咯咯笑”频道……收到的回复量令她们感到惊讶。

  From colourful make-up looks to videos showcasing her singing, Adalia has acquired a devoted fanbase of 1.5 million subscribers who are always telling her that she is "so cute" and "so beautiful".

  阿黛丽娅已经拥有150万忠实粉丝,从色彩斑斓的妆容到演唱视频,她的视频内容日益丰富,粉丝纷纷评论“太可爱了”、“太漂亮了”。

  What’s more, Adalia’s channel has racked up over 170 MILLION views in the past six years with her most popular videos being her dance routines and make-up tutorials with her mum.

  更重要的是,阿黛丽娅的频道在过去六年里浏览量超过1.7亿,最火的是她的舞蹈动作和她妈妈的化妆教程。

  Reflecting on her online fame, Adalia said: "I guess I am a diva because I always get what I want!"

  谈到她在网上的名气时,阿黛丽娅说:“我觉得我是一个天后,因为我总能得到我想要的!”

  Natalia also agrees and describes how her only daughter has both her parents "wrapped around her little finger."

  娜塔莉亚也同意她的说法,并描述了父母是如何“被小女儿的光环折服”的。

  Adalia’s stepfather Ryan, 31, said: "Having a social media superstar 11-year-old, it’s crazy, especially when we are out in public - you know, a lot of people recognise her."

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