Haaa! Gotta look right there.

哈！要看這邊喔

Gotta look right there.

看這邊

Like you're talking to a person like a stranger!

就像你在和一位陌生人講話一樣

I just told her, like, "Yeah, you were born different.

就如同我剛告訴她的：「沒錯，妳生來就與眾不同。」

"That's just who you are." And she owns it Mm-hm.

「那就是妳。」她就是這樣沒錯

I like to do YouTube videos for my fans because I love them, I guess.

我喜歡為我的粉絲做 YouTube 影片，我想是因為我喜愛他們

Ow. OK, there you go.

噢。好了，就是這樣

She mumbles.

她喃喃自語著

In her case, like, we don't put any fear into her

像她這種情況，就好比，我們不會對她產生任何恐懼

or, like explain what progeria is or even say the word progeria.

或者像是在解釋什麼是早衰，或甚至說到早衰這個詞。

We just treat her like a normal ten-year-old,

我們就像對待十歲女孩一樣對待她

just try to give her the best life.

試著給她最好的生活

She chuckles, yeah.

她咯咯地笑著

You're welcome. She sees herself as being different.

不客氣。她知道她自己和別人不一樣

There are days where she goes, "I wish I had hair,

有時候她會說：「我希望我有頭髮。」

"I wish I looked like everybody else,"

「我希望我看起來和其他人一樣。」

but then she goes and says, "Who needs hair anyways?

然後她會說：「誰又需要頭髮呢？

"I have a bunch of wigs."

我有一堆假髮。」

I like to do make-up. I like to play barbies. I like to play on my phone. I like, definitely, definitely, like to watch videos.

我喜歡化妝。我喜歡玩芭比娃娃。我喜歡玩我的手機。我超級超級喜歡看影片

I like to play with my brothers.

我喜歡和我的兄弟們一起玩

But sometimes I get a little grumpy so I guess not, but...

但是有時候，我會發一點脾氣，我猜想不是，但是…

But... I basically like everything. Unicorns are my favorite, I guess, cause they're pretty, sparkly, pink.

但是…我基本上喜歡所有事物。獨角獸是我的最愛，我想，是因為牠們很美，會閃閃發光，而且，是粉紅色的

Your spirit animal is weird too.

妳的精神象徵動物也很特別

You can't? You can't tell him? No.

你不能？你不能跟他說？不

You tell him. What do you want me to tell him?

你跟他說。妳想跟他說什麼？

Whisper it, whisper it.

偷偷告訴我

She said...

她說…

..she thinks you're cute.

她覺得你很可愛

Yeah? I think you're cute, so.

是嗎？我也覺得妳很可愛

She giggles.

她笑著

That was awkward.

那很尷尬

That was awkward! Yes.

很尷尬！對啊

It can be hard some days, especially at night.

有時候會很痛苦，特別是在晚上

She sighs.

她嘆氣

When everybody goes to sleep and, you know,

當每個人都睡著之後，你知道

I'm just thinking about the day.

我就會想白天發生的事

Just thankful for another day, I guess.

是在感謝第二天的到來吧，我想

Adalia Rose has a rare genetic disorder which affects less than 500 people worldwide.

Adalia Rose 患有罕見的遺傳性疾病，全球不到 500 人患有這種疾病

Get out of here. No.

離開這裡。不

Adalia has a rare ageing disorder called progeria.

Adalia 患了一種被稱為早衰的罕見疾病

Everybody makes progerin, it's what makes you age,

每個人都會製造「早年蛋白」，這是造成早衰的原因

and she just makes a lot of it, so that's what makes her age faster.

她產生大量的「早年蛋白」，而這是造成她年齡老化很快的原因

In addition to premature ageing, some of the additional symptoms are limited growth, lack of body fat and muscle, loss of hair, visible veins, abnormal facial features, high-pitched voice and stiffness in joints.

除了過早衰老，還有一些額外的症狀是限制生長、身體脂肪和肌肉缺乏、沒有頭髮、靜脈明顯、臉部特徵異常、音頻高和關節僵硬

I like other Barbies like this one.

我喜歡像這樣的芭比娃娃

I like her.

我喜歡她

I think this is called Pop-Up Camper...

我想她的名字是 Pop-Up Camper

Because it's Barbie, I don't know.

因為這是芭比娃娃，我不知道

Give me the backpack!

把背包給我

Statistically, most children with Progeria don't live past 13-year-old.

據統計，大多數患有早衰症的孩童活不到13歲

We don't talk about life expectancy

我們不討論預期壽命

or any possibility of this could happen or that could happen to her.

或任何症狀發生在她身上的可能性

We just live day by day.

我們就是一天過一天

I mean, anything can happen to anyone, right? Exactly, yeah.

我的意思是，任何人都可能發生任何事，對吧？ 沒錯，的確是這樣

Tomorrow is a special day for Adalia. Tomorrow she turns 11.

對 Adalia 而言，明天是個很特別的日子。明天她就 11 歲了

It's tomorrow?

就在明天？

What! The days are going so by, like fast.

什麼！時間過得真是快

I'm very excited. I can't wait to open my presents.

我好開心。 我迫不及待想打開禮物

Despite the difficulties she faces, Adalia is an internet superstar.

即使面對困難，Adalia 是個網路上的超級明星

# OK, I'm rapping with my friends

# 好了，我要和朋友們一起玩樂

# Getting all this money, stacking dollars, stacking cents... #

＃獲取這裡所有的錢，一元一元，一分一分......＃

Well, in the beginning when we first started her Facebook,

好的，在我們第一次開始她的 Facebook 的時候

it was just for giggles.

就只是咯咯的笑聲而已

It was surprising how fast it grew.

沒想到 Facebook 上的觀看率成長得這麼迅速

She has, like, 14 million people on her Facebook

現在，她的 Facebook 上有 1400 萬的粉絲

and all her subscribers on YouTube.

而閱這些人全部都訂閱了她的 YouTube

We like to pump it.

我們喜歡用這件事來激勵她

And we like to dab.

我們喜歡輕拍

We like to dab.

我們喜歡輕拍

I definitely think it's fair to describe Adalia as a diva.

我們將 Adalia 塑造成為女主角

An ocean wave.

就像海浪一樣

People have been asking about Adalia's eye.

很多人問到 Adalia 的眼睛

The story about that is that...

故事是這樣的…

Oh, God!

天啊

Stop.

停

I know, but... SHE WHIMPERS

我知道，但是…她在嗚咽

She's very self-conscious about it, but...

她自我意識很強，但是...

So, surfer's eye, it's basically like scar tissue forming

她的眼睛，基本上是疤痕組織組成的

CRUNCHING NOISILY

嗄吱嗄吱的噪音

I basically...

基本上，我...

Um...

嗯...

Yeah, I'm her puppet.

沒錯，我是她的傀儡

Roll your eyes back.

翻白眼

Ha-ha hah!

哈哈哈

HE SCREECHES

他尖叫

Having a social media superstar 11-year-old is crazy,

擁有社群媒體的 11 歲超級明星瘋狂了

especially when we're out in public, you know.

特別是當我們在公共場合的時候，你知道的

A lot of people recognise her.

很多人認出她

Yeah. What did you think?

是啊。你覺得呢？

I've been down the slide!

我在下滑

They say good things to her all the time. They love all your videos.

他們一直對她說一些好的事情。他們愛你的所有影片

There's constant comments of how she's inspirational

不斷評論她是如何鼓舞人心的

and how she doesn't let anything stop her.

以及她如何克服所有的困難

And every time she hears those things, it makes her really happy.

每次她聽到這些事都會很開心

Let me show you one more video.

讓我再給你看一部影片

Smile!

微笑

Look at Daddy.

看爸爸這邊

Can I get a tissue?

可以幫我拿一張紙巾嗎？

There you go. Are you really going to film me blowing my nose?

妳真棒。你真的要拍我吹自己的鼻子嗎？

Oh!

喔

All right, diva. How do you look?

好的，女主角，妳看起來如何呢？

Fabulous.

非常好

Adalia, do you think it's fair to say

Adalia 你覺得說妳有點像女主角

that you are a little bit like a diva?

是公平的嗎？

Umm... I don't know.

嗯... 我不知道

Because I am a diva.

因為我是女主角

I get what I want.

我得到了我想要的東西

I do.

我的確得到了

They're cool. Are they new?

他們好酷。他們是新來的嗎？

No.

不

Bye!

再見

Bye!

再見

We went to the mall and we got some ice-cream with chocolate syrup.

我們去賣場，買了一些有巧克力糖漿的冰淇淋

And then we went to Claire's, and I got a wand and a tiara.

然後我們去 Clair's，買了一根魔杖和一個頭飾

Where's my tiara? Ok.

我的頭飾呢？好的

My favourite thing about being her mom is watching her grow

身為她的母親，我最喜歡的事就是看著她成長

and, like, seeing just how different she is from everyone.

就像，看到她的與眾不同

Just seeing how she takes on every day

看著她每天的表現

and just learning from her, as well. Mmm.

並且從她身上學習。嗯

ALL: # Happy birthday to you. #

所有人：「祝妳生日快樂。」

I would describe Adalia as a wild one.

我會形容 Adalia 是狂野的

Yeah. Stubborn.

是啊。很倔強

Determined.

有著堅決的意念

Driven. Courageous.

有動力的。勇敢的

Crazy.

瘋狂的

I'm just making videos doing what I wanna do.

我只是拍我想拍的影片

I can't talk ok don't judge my body.

我不能說話，所以不要評論我的身體

I like dabbing. It's my favorite one.

我喜歡輕拍。這是我最喜歡的