淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

新聞 09-02

當年放一公升眼淚的時候，小編除了被灌日式雞湯，還跟著哭的稀里嘩啦的

澤尻英龍華飾演的少女池內亞也（真實故事中是木藤亞也）被診斷出患有脊髓小腦萎縮症。這是一種殘酷的遺傳病，目前並沒有任何治癒措施。一旦患病，身體就會一天天失去控制，很多病人都在二十歲左右死亡。

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

病痛奪走了亞也的行動能力，曾經的籃球少女後來無法行走，連筆都握不穩

在蘇格蘭，有個22歲的妹子Lucy，患上了運動神經元疾病。

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

這是一種和脊髓小腦萎縮症類似的疾病，患者會漸漸失去行動能力，然後在發病後三到五年死亡。

十九歲被診斷出來，讓Lucy成了全蘇格蘭最年輕的運動神經元病患者。

為了引起社會關注，尋找醫治辦法，父親Robert在眾籌網站上寫了一封給女兒的信：

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

Tuesday, November 19, 2013, is the day I will never forget. It changed our family s life forever.

2013年11月19日，星期二。我永遠忘不了這一天。我們一家的生活就此改變了。

No father should have to write a letter like this to his daughter, but it is to show how special and unique you will always be to me.

沒有哪個父親會給女兒寫這樣一封信，我只想告訴你，對我來說，你是如此特別和寶貴。

You have taught all of us the meaning of true strength and courage and I treasure every precious moment we have left together.

你讓我們知道了勇氣和堅強的意義，和你在一起的每一刻，我都會珍惜。

Your mum and I knew something was wrong with you from as early as June that year but never imagined the enormity of what was coming our way.

那一年，你媽媽和我在六月就知道你身體狀況不對勁兒，可我們全然沒想到會是這樣的頑症。

You were working at the Baxters Visitor Centre and burned your hand with hot soup. We thought you were protecting the scald, but when we were having tea a few nights later we noticed you were only using one hand.

那時候，你在巴克斯特旅遊集散中心工作，不小心被湯給燙了手。我們想你可能是要保護傷疤（所以只用健康的那隻手），但是有幾天晚上喝茶的時候，我們發現你一直只用一隻手。

Then you went off to Camp America and during your time there we heard you had fallen and hurt yourself. When we picked you up from Glasgow Airport we noticed you walking oddly, and that your speech had changed.

然後你去了美國夏令營，我們又聽說你摔倒了，受傷了。當我們從格拉斯哥機場把你接回來的時候，你走路和說話的樣子都變了。

It is the one thing no father wants to admit to himself – that his daughter is sick.

對一個父親來說，沒什麼比看到女兒生病更痛苦的了。

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

I ll always remember your first appointment with the specialists. There were tests, scans and a lumbar puncture and by early afternoon we were told we could go home, but to come back the next morning for more tests.

我永遠記得你第一次去看專家的那天。他們給你做了各種檢查，還做了腰椎穿刺，並讓我們先回去，明天再來取化驗報告。

Although we were worried, we were in good spirits, laughing, joking and watching The Big Bang Theory on your laptop between tests.

雖然我們挺擔心，但是我們都挺樂觀的。你做檢查的時候，我們還在用你的筆記本電腦看生活大爆炸。

I was thinking that whatever it was would be cured with some pills or a routine operation. Soon you would return to your exciting new life at college in Glasgow.

我想，無論是什麼病，吃藥總會好，大不了做手術，沒什麼大礙。病治好了，你又該重返學校，開始新生活了。

We came back to the hospital and I remember how the doctors and nurses brought in chairs and sat us down. They began to tell us that they had done all of their tests and asked me if I thought I knew what the problem might be.

我們去醫院取報告的時候，醫生和護士搬了個椅子讓我們坐下。他們說，該做的檢查他們都做了，然後問我知不知道你到底怎麼了。

I said we had discussed the symptoms and thought it could be multiple sclerosis, a brain tumour or some kind of stroke.

我猜可能是多發性硬化症，腦腫瘤，要不就是中風。

The specialist paused for a second and then said, It s none of these, it s motor neurone disease.

專家停頓了一秒鐘然後說，「都不是。是運動神經元疾病。」

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

I felt physically sick. My heart started to pound. You didn t know what it was, but I knew all about it from reading Fernando Ricksen s story just a couple of weeks earlier.

我整個人都蒙了，心突突跳。你可能還不如我了解這種病，因為幾周前，我看了Fernando Ricksen的故事。（Fernando Ricksen，荷蘭足球運動員，患有該疾病。）

You were told that it s incurable, there is no effective medicine to help control it and 90 per cent of people die within the first three years.

當然，大家都和你說可以治癒。然而事實不是這樣，百分之九十的患者都會在發病的三年內死亡。

These facts still ring in my ears, accompanied by the vision of you crying. I have never felt so helpless.

這個殘酷的事實一直在我耳朵里回放，我甚至能想像出你哭泣的場景。我從來沒有感到這樣無助。

I had just watched the doctor deliver a death sentence on my youngest daughter.

醫生就這樣給我的小女兒判了死刑。

What I would have done to swap places with you. I started to think they had made a mistake but was told all other possible illnesses had been ruled out. It was MND.

要是我能代替你去生病該多好呀。我甚至想，可能是誤診吧。然而並沒有。就是運動神經元疾病。

We were asked to return to the hospital the following day, with all of our family, to meet a doctor who had a special interest in MND who would explain and answer any questions.

第二天，我們又回到了醫院，這一次全家人一起來了，專家們都在。

Then we were free to go. As we left the hospital, I just felt, This can t be right. My girl is only 19.

離開醫院的時候，我想：不可能呀，女兒才十九歲。

I found it hard to look at you without my eyes filling with tears. There was nothing I could say or do to comfort you, to make this go away or make things better.

我甚至無法平靜的看著你，我隨時都可能哭。說啥安慰的話都沒用了。

We now had to make the journey back to your flat and break the news to the rest of our family.

我們現在得向大家公開這個殘酷的事實。

Still in a state of shock, we tried to compose ourselves. And strangely enough you felt hungry, so we set off down the street in search of a place to eat. We ended up in the Ubiquitous Chip. It was late afternoon and we were the only customers.

你那時候忽然說餓了，然後我們就在街上找了個地方吃飯，最後去了Ubiquitous Chips。那時候已經挺晚了，就我們一家坐在那兒。

We ordered food and I stared at my cutlery with the events of the day replaying over and over in my head. The doctor s words – 90 per cent of MND sufferers don t make it past three years – just kept repeating. How could this be possible?

我們點了餐。我獃獃地看著餐具，腦子裡一遍遍回放著在醫院發生的一切。「百分之九十的患者活不過三年」，醫生的話一直徘徊在耳邊。為什麼會發生這樣的事？

My darling daughter may only have three years to live and will end up totally paralysed.

再過三年，我親愛的女兒會癱瘓，會死。

What happened next will stay with me for the rest of my life. You looked up at me with a smile on your face and said, I wish I had multiple sclerosis now , and laughed.

接下來發生的一切，我永遠忘不了。你抬頭看著我，微笑著說：「我倒還真希望我得了多發性硬化症呢，」然後你大笑起來。

I was absolutely amazed at your courage, that you could make a joke of your situation. And although I really wanted to cry, I just had to laugh with you.

你那麼勇敢，還和我們開玩笑，我當時徹底為你折服了，我和你一起大笑起來，雖然我其實很想哭。

From then on, I promised myself to look for the positives, to help and support you. The last thing you needed to see was your dad filling up with tears every time he looked at you. I had to show the strength that you had shown me.

從那以後，我對自己發誓，要樂觀，要好好幫助和支持你。這時候的你，最不想看到的就是一個整天哭哭啼啼的老爸。女兒那麼堅強，做老爸的哪兒有理由悲觀？

Your focus on making the most of the time you have left has been the inspiration for our family to stay positive. You have been busy working your way through a bucket list of 45 wishes, including flying helicopters, scuba diving and taking a seat at the opera.

你專心過好每一天，我們大家都深受鼓舞。你給自己許了45個願望，並忙著把它們一個個實現，開直升飛機，潛水，看歌劇...

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……

MND devastates families and leaves sufferers no chance of survival, no matter how hard they fight.

無論患者多努力，這種病最終都會奪取他們的生命。

That s why it s so important to understand the disease and find a cure. It doesn t discriminate and never in a million years would I have thought one of my children would be taken by such a horrible condition.

這就是為什麼我希望提高社會對這種疾病的關注，並最終找到解藥。我從來沒想過，我的孩子會得這麼恐怖的疾病。

You were always a very fit, active, outdoors kind of girl. You didn t smoke or drink and had a very healthy lifestyle.

你一直是個健康，活躍，喜歡戶外運動的姑娘，煙酒不沾。

At such a young age, why should you suffer this? No one knows and we will never solve the puzzle of MND unless the awareness, funds and demand for the research continues, to help us understand it and find a cure.

那麼年輕的你，為何得受那麼大的苦難？沒有到位的資金，科學研究計劃和社會關注，這種病永遠不可能被根治。

I m incredibly sad that you won t achieve all of your goals and dreams. We are so proud of you, and how well you have coped with slowly losing your speech and mobility.

我很難過，因為你沒法實現你所有的夢想了。我們為你驕傲，就算是失去了語言和行動能力，你也沒有氣餒。

I thank my lucky stars to have such a beautiful, fearless and determined daughter who has taught me to keep on fighting when things are tough.

能有這麼美麗，無畏和堅持不懈的女兒是我一生的幸運，你教會了我，在逆境中，也要奮起反擊。

這個月，父親Robert要去秘魯馬丘比丘登山。眾籌網站上的鏈接在這裡https://www.justgiving.com/fundraising/Robert-Lintott

［悅居英國］

homeinuk

一群悅居英國筒子們的後花園

淚目！真人版的一公升眼淚，父親對臨死的她說，你已經儘力了……