阿達(dá)利婭.羅斯盡管患有一種極其罕見(jiàn)的衰老病癥,但憑借活潑開(kāi)朗的性格和勵(lì)志的故事,她的YouTube賬號(hào)已經(jīng)有了1.7億多的瀏覽量,她自認(rèn)為自己是“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.
這位11歲的網(wǎng)絡(luò)紅人在嬰兒時(shí)期就被診斷出患有哈欽森-吉爾福德早衰癥(患有該遺傳病的兒童全世界不到500名)。但盡管如此,她已然繼續(xù)在網(wǎng)上記錄自己充滿樂(lè)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.
這位美國(guó)少女以她的美容教程和視頻博客而聞名,她經(jīng)常和自己的150萬(wàn)YouTube粉絲分享她的日常生活。
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.
伴隨著快速的早衰,阿達(dá)利婭開(kāi)始遭受脫發(fā)、體脂不足、靜脈突出、音調(diào)高亢和關(guān)節(jié)僵硬帶來(lái)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.
阿達(dá)利婭的母親娜塔莉亞.帕蘭特現(xiàn)年29歲,她說(shuō),阿達(dá)利婭在3個(gè)月大的時(shí)候就被確診了。醫(yī)生們?cè)谒錾蟮乃闹軆?nèi)就發(fā)現(xiàn)了不對(duì)勁。
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."
考慮到阿達(dá)利婭沒(méi)有“發(fā)育”,當(dāng)時(shí)還是單身的母親回憶說(shuō),“她肚子上的皮膚的確很緊,但就是看起來(lái)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."
兩個(gè)月后,娜塔莉亞被這個(gè)改變?nèi)松脑\斷弄得心力交瘁,她還記得“當(dāng)時(shí)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."
也正是在那個(gè)時(shí)候,阿達(dá)利婭“開(kāi)始脫發(fā),她的小血管開(kāi)始增多,皮膚也開(kāi)始變薄。”
Sufferers of this extremely rare condition (caused by a abnormal gene protein) are also at an increased risk of dwarfism.
患有這種極其罕見(jiàn)的疾病(由異常的基因蛋白引起)的人患侏儒癥的風(fēng)險(xiǎn)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,在被確診11年后,阿黛麗婭和她的家人(住在德克薩斯州)決定活在當(dāng)下,就算自己最多只能活13歲,她們也決定不再考慮這個(gè)問(wèn)題了。
Now an older sister to three little brothers, Adalia styles out her lack of natural hair with her signature colourful wigs.
阿黛麗婭現(xiàn)在是三個(gè)弟弟的姐姐,由于沒(méi)有長(zhǎng)頭發(fā),她戴著標(biāo)志性的彩色假發(fā),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.
和其他喜歡社交媒體的青少年一樣,阿黛麗婭和她的母親在2012年創(chuàng)建了她的“咯咯笑”頻道……收到的回復(fù)量令她們感到驚訝。
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".
阿黛麗婭已經(jīng)擁有150萬(wàn)忠實(shí)粉絲,從色彩斑斕的妝容到演唱視頻,她的視頻內(nèi)容日益豐富,粉絲紛紛評(píng)論“太可愛(ài)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,阿黛麗婭的頻道在過(guò)去六年里瀏覽量超過(guò)1.7億,最火的是她的舞蹈動(dòng)作和她媽媽的化妝教程。
Reflecting on her online fame, Adalia said: "I guess I am a diva because I always get what I want!"
談到她在網(wǎng)上的名氣時(shí),阿黛麗婭說(shuō):“我覺(jué)得我是一個(gè)天后,因?yàn)槲铱偰艿玫轿蚁胍?”
Natalia also agrees and describes how her only daughter has both her parents "wrapped around her little finger."
娜塔莉亞也同意她的說(shuō)法,并描述了父母是如何“被小女兒的光環(huán)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."
阿黛麗婭的繼父萊恩今年31歲,他說(shuō):“作為一個(gè)11歲的社交媒體巨星,這太瘋狂了,尤其是當(dāng)我們?cè)诠矆?chǎng)合的時(shí)候——你懂得,很多人都認(rèn)識(shí)她。”
And according to the online star’s mother, Adalia is also constantly complimented on her videos and praised for "how she’s inspirational and how she doesn’t let anything stop her."
據(jù)這位網(wǎng)絡(luò)明星的母親說(shuō),因?yàn)橐曨l阿黛麗婭受到的稱(chēng)贊也絡(luò)繹不絕,她說(shuō):“她是那么鼓舞人心,不愿讓任何事情阻止自己。”
Finding strength in her loyal fanbase, it’ll come as no surprise that Adalia "loves those comments" on her videos.
能在忠實(shí)的粉絲群中找到力量,阿黛利婭“喜歡那些評(píng)論”也就不足為奇了。