ABOUT THE SPEAKER
Sarah Gray - Researchers' dream donator
Sarah Gray found meaning in tragic loss­­ by donating the organs of her newborn son to advance scientific research.

Why you should listen

While struggling to cope with the loss of their infant son Thomas, Sarah Gray and her family met the researchers who received his eye, liver and cord blood donations. This journey garnered national and international media attention and brought profound peace to the Gray family.

Gray is the director of marketing and public affairs for the American Association of Tissue Banks and a member of the AATB Donor Family Guidance Document Committee. She is author of a forthcoming memoir from HarperOne, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science.

Gray holds a BA in Communications from Marquette University and a Masters in Public Communication from American University, where her capstone topic was non­directed kidney donation. She lives in Washington, DC with her husband Ross and children, Callum and Jocelyn.

More profile about the speaker
Sarah Gray | Speaker | TED.com
TEDMED 2015

Sarah Gray: How my son's short life made a lasting difference

莎拉.格雷: 我兒短暫的一生怎樣為人帶來永遠的影響

Filmed:
1,543,224 views

莎拉.格雷知道自己未出生的兒子-湯瑪斯患了無腦畸型,這個不治之症後,她決心要把這個家庭不辛轉化為非比尋常的禮物,就是把兒子遺下的器官捐贈到科學研究機構。這是一場感謝生命和探索的演說,她跟大家分享在喪親期間尋找意義的歷程,還有把希望的信息宣揚至其他喪親的家庭。
- Researchers' dream donator
Sarah Gray found meaning in tragic loss­­ by donating the organs of her newborn son to advance scientific research. Full bio

Double-click the English transcript below to play the video.

00:13
I was three months個月 pregnant with twins雙胞胎
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我剛懷雙胞胎三個月,
00:16
when my husband丈夫 Ross羅斯 and I
went to my second第二 sonogram聲像.
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我丈夫羅斯陪我照第二次超音波時。
00:21
I was 35 years年份 old at the time,
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當時我三十五歲。
00:23
and I knew知道 that that meant意味著
we had a higher更高 risk風險
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這意味著我們的孩子
00:26
of having a child兒童 with a birth分娩 defect缺陷.
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患有先天缺陷的風險非常高
00:29
So, Ross羅斯 and I researched研究
the standard標準 birth分娩 defects缺陷,
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魯斯跟我便研究常態的先天缺陷
00:32
and we felt reasonably合理 prepared準備.
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我們也覺得可以應付。
00:35
Well, nothing would have prepared準備 us
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但我們根本沒料到,
00:37
for the bizarre奇異的 diagnosis診斷
that we were about to face面對.
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會有不尋常的診斷。
00:42
The doctor醫生 explained解釋
that one of our twins雙胞胎, Thomas托馬斯,
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醫生告訴我們其中一個
胎兒,也就是湯瑪斯,
00:45
had a fatal致命 birth分娩 defect缺陷
called anencephaly無腦畸形.
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得了致命的先天缺陷-無腦畸型。
00:49
This means手段 that his brain
was not formed形成 correctly正確地
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就是他的腦袋發育不正常。
00:52
because part部分 of his skull頭骨 was missing失踪.
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因為他部分頭骨沒有成形。
00:55
Babies嬰兒 with this diagnosis診斷
typically一般 die in utero子宮
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這類嬰兒通常會在死在子宮裡
00:59
or within a few少數 minutes分鐘, hours小時
or days of being存在 born天生.
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或在出生後數分鐘至數日內死亡
01:05
But the other twin雙胞胎, Callum卡勒姆,
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但是另一孩子,也就是卡勒,
01:08
appeared出現 to be healthy健康,
as far as the doctor醫生 could tell,
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根據醫生所判,似乎是健康的。
01:12
and these twins雙胞胎 were identical相同,
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兩人是同卵雙胞胎。
01:16
genetically基因 identical相同.
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基因組合相同。
01:20
So after a lot of questions問題 about
how this could have possibly或者 happened發生,
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關於為何如此,我們也問過醫生一堆問題,
01:24
a selective可選擇的 reduction減少 was mentioned提到,
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醫生提出減胎的建議。
01:27
and while this procedure程序
was not impossible不可能,
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這個辦法或許行得通,
01:30
it posed構成 some unique獨特 risks風險
for the healthy健康 twin雙胞胎 and for me,
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但可能會為我和另一個
健康的胎兒帶來風險
01:35
so we decided決定 to carry攜帶
the pregnancy懷孕 to term術語.
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於是我們決定讓他足月出生
01:39
So there I was, three months個月 pregnant,
with two trimesters孕期 ahead of me,
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那時我懷孕三個月,
還要等待6個月
01:43
and I had to find a way to manage管理
my blood血液 pressure壓力 and my stress強調.
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而且要妥善控制自己的
血壓和情緒
01:49
And it felt like having a roommate室友
point a loaded gun at you for six months個月.
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感覺有如一個室友在那六個月裡
用上膛的槍指著我
01:55
But I stared盯著 down
the barrel of that gun for so long
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而我瞪著那個槍口良久
02:00
that I saw a light
at the end結束 of the tunnel隧道.
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直到我從黑暗中看到一線曙光
02:03
While there was nothing we could do
to prevent避免 the tragedy悲劇,
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雖然我們不能避免悲劇
02:06
I wanted to find a way
for Thomas's托馬斯的 brief簡要 life
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但我為湯瑪斯短暫的一生
02:09
to have some kind of positive impact碰撞.
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找到了些許積極的影響。
02:11
So I asked my nurse護士 about organ器官,
eye and tissue組織 donation捐款.
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於是我問護士有關捐贈器官等事情
02:16
She connected連接的 with our local本地
organ-procurement器官採購 organization組織,
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她聯絡了本地的器官捐贈組織
02:19
the Washington華盛頓 Regional區域性
Transplant移植 Community社區.
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華盛頓地區移植協會(WRTC)
02:23
WRTCWRTC explained解釋 to me
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這所協會向我解釋
02:25
that Thomas托馬斯 would probably大概 be too small
at birth分娩 to donate for transplant移植,
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湯瑪斯出生時可能太小,
難以把他的器官移植到其他人
02:30
and I was shocked吃驚:
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我很震驚:
02:31
I didn't even know
you could be rejected拒絕 for that.
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我不知道竟然連你們
也會拒絕接受捐贈。
02:33
But they said that he would be
a good candidate候選人 to donate for research研究.
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但他們說他很適合捐贈做硏究。
02:38
This helped幫助 me see Thomas托馬斯 in a new light.
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這樣令我對湯瑪斯有了新看法
02:40
As opposed反對 to just a victim受害者 of a disease疾病,
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與其只是做一個疾病的受害者,
02:43
I started開始 to see him as a possible可能 key
to unlock開鎖 a medical mystery神秘.
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我倒發覺他會是打開
醫學謎團的鎖匙。
02:48
On March遊行 23, 2010,
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2012年3月23日,
02:51
the twins雙胞胎 were born天生,
and they were both born天生 alive.
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孖胎兒出生了,兩人都活下來
02:55
And just like the doctor醫生 said,
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正如醫生說過
02:57
Thomas托馬斯 was missing失踪
the top最佳 part部分 of his skull頭骨,
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湯瑪斯失去了頭骨的頂部
03:00
but he could nurse護士,
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但他可以吃
03:02
drink from a bottle瓶子,
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奶瓶裡的奶
03:03
cuddle and grab our fingers手指
like a normal正常 baby寶寶,
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像正常的嬰兒般依偎和
抓緊我們的手指
03:07
and he slept in our arms武器.
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還躺在我們的臂彎睡覺。
03:10
After six days, Thomas托馬斯 died死亡 in Ross's羅斯 arms武器
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六天後,湯瑪斯躺在魯斯懷裡逝世
03:13
surrounded包圍 by our family家庭.
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全家人都陪伴著他。
03:16
We called WRTCWRTC, who sent發送 a van麵包車 to our home
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我們通知 WRTC 後,他們派車
03:21
and brought him to Children's兒童
National國民 Medical Center中央.
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把他送到國家兒童醫療中心
03:24
A few少數 hours小時 later後來, we got a call to say
that the recovery復甦 was a success成功,
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數小時後,我們收到器官
恢復成功的通知
03:28
and Thomas's托馬斯的 donations捐款
would be going to four different不同 places地方.
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捐贈的器官將會送到4處不同的地方
03:32
His cord blood血液 would go
to Duke公爵 University大學.
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他的臍帶血送到社克大學
03:35
His liver would go to a cell-therapy細胞療法
company公司 called CytonetCytonet in Durham達勒姆.
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肝臟送到位於德罕城的
一所叫Cytonet 細胞治療公司。
03:40
His corneas眼角膜 would go
to Schepens斯格本斯 Eye Research研究 Institute研究所,
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眼角膜送到Schepens眼科硏究院,
03:43
which哪一個 is part部分 of Harvard哈佛 Medical School學校,
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它隸屬於哈佛大學醫學院,
03:45
and his retinas視網膜 would go
to the University大學 of Pennsylvania賓夕法尼亞.
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而視網膜被送到賓卅大學。
03:50
A few少數 days later後來, we had a funeral葬禮
with our immediate即時 family家庭,
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數日後,我們舉行了喪禮
03:54
including包含 baby寶寶 Callum卡勒姆,
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當日嬰兒卡姆勒也有出席
03:56
and we basically基本上
closed關閉 this chapter章節 in our lives生活.
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大致上我們人生的這一節
已告一段落
03:59
But I did find myself wondering想知道,
what's happening事件 now?
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但我感到納悶現在發生什麼事?
04:03
What are the researchers研究人員 learning學習?
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硏究學者正在硏習什麼?
04:05
And was it even worthwhile合算 to donate?
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是否值得捐贈?
04:09
WRTCWRTC invited邀請 Ross羅斯 and I
to a grief哀思 retreat撤退,
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WRTC 邀請我和魯斯參加哀傷靜修。
04:12
and we met會見 about
15 other grieving悲傷 families家庭
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我們見了15個喪親家庭
04:15
who had donated捐贈 their loved喜愛 one's那些
organs器官 for transplant移植.
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他們把心愛親人的器官捐贈出來
04:19
Some of them had even received收到 letters
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有些家庭甚至收到
04:21
from the people who received收到
their loved喜愛 one's那些 organs器官,
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來自那些器官捐贈獲得者的
04:24
saying thank you.
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感謝信。
04:27
I learned學到了 that they
could even meet遇到 each other
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我聽說雙方甚至為了見面
04:29
if they'd他們會 both sign標誌 a waiver放棄,
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要簽署棄權聲明,
04:30
almost幾乎 like an open打開 adoption採用.
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就好像是公開領養一樣。
04:32
And I was so excited興奮,
I thought maybe I could write a letter
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我非常興奮,心想或許可以寫一封信
04:35
or I could get a letter
and learn學習 about what happened發生.
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或者收到一封信,知道後來怎樣
04:38
But I was disappointed失望 to learn學習
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但是我非常失望,因為得知這些過程
04:39
that this process處理 only exists存在
for people who donate for transplant移植.
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只有捐贈器官移植的家庭才會經歷
04:43
So I was jealous.
I had transplant移植 envy羨慕, I guess猜測.
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我猜想自己可能炉忌別人移植器官。
04:46
(Laughter笑聲)
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(笑聲)
04:48
But over the years年份 that followed其次,
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但是接下來的幾年
04:50
I learned學到了 a lot more about donation捐款,
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我對器官捐贈認識了不少
04:52
and I even got a job工作 in the field領域.
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甚至這個領域找到工作。
04:54
And I came來了 up with an idea理念.
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跟著我有一個想法
04:57
I wrote a letter that started開始 out,
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我寫了一封信,開始是這樣說:
04:59
"Dear Researcher研究員."
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「親愛的硏究學者。」
05:02
I explained解釋 who I was,
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我先解釋自己是誰
05:04
and I asked if they could tell me
why they requested要求 infant嬰兒 retinas視網膜
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然後問他們可否告訴我為什麼在
05:08
in March遊行 of 2010,
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2010年3月需要嬰兒的視網膜
05:10
and I asked if my family家庭
could visit訪問 their lab實驗室.
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還問他們讓我們參觀那
05:13
I emailed電子郵件 it to the eye bank銀行
that arranged安排 the donation捐款,
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我電郵到眼庫的舊眼科統籌基金
05:17
the Old Dominion主權 Eye Foundation基礎,
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他們負責安排捐贈事宜
05:19
and asked if they could
send發送 it to the right person.
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我問他們可否分配給合適的人選
05:22
They said that they had
never doneDONE this before,
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他們說以往從未做過這樣的事情
05:24
and they couldn't不能 guarantee保證 a response響應,
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而且不能擔保有回應。
05:26
but they wouldn't不會 be an obstacle障礙,
and they would deliver交付 it.
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這樣難不倒我,他們一定回覆。
05:30
Two days later後來, I got a response響應
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兩日後,我收到答覆
05:32
from Dr博士. ArupaArupa Ganguly甘古利
of the University大學 of Pennsylvania賓夕法尼亞.
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那是來自賓州大學的
Arupa Ganguly博士
05:36
She thanked感謝 me for the donation捐款,
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她感謝我的捐贈
05:38
and she explained解釋
that she is studying研究 retinoblastoma視網膜母細胞瘤,
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還説她正在硏究視網膜細胞瘤
05:41
which哪一個 is a deadly致命 cancer癌症 of the retina視網膜
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那是一種致命的視網膜癌症
05:42
that affects影響 children孩子
under the age年齡 of five,
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影響五歲以下的小童
05:45
and she said that yes,
we were invited邀請 to visit訪問 her lab實驗室.
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她邀請我們到訪她的實驗室
05:48
So next下一個 we talked on the phone電話,
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其後我們電話交談
05:50
and one of the first things she said to me
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其中有一件事她最想對我說
05:52
was that she couldn't不能 possibly或者
imagine想像 how we felt,
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就是她無法想像我們的感受
05:55
and that Thomas托馬斯 had given特定
the ultimate最終 sacrifice犧牲,
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湯瑪斯終極的奉獻
05:57
and that she seemed似乎
to feel indebted感激的 to us.
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令她感到好像虧欠了我們
06:00
So I said, "Nothing against反對 your study研究,
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於是我說:「我不是反對妳的硏究
06:03
but we didn't actually其實 pick it.
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我們其實無從選擇
06:05
We donated捐贈 to the system系統,
and the system系統 chose選擇 your study研究.
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我們捐贈到體制,
它選擇了你的研究。
06:09
I said, "And second第二 of all,
bad things happen發生 to children孩子 every一切 day,
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其次是每天都有兒童發生不幸的事情
06:14
and if you didn't want these retinas視網膜,
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如果你不要這些視網膜
06:16
they would probably大概
be buried隱藏 in the ground地面 right now.
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它們很可能已經長埋地下
06:18
So to be able能夠 to participate參加 in your study研究
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所以能夠為妳的硏究出一分力
06:22
gives Thomas's托馬斯的 life
a new layer of meaning含義.
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將會為湯瑪斯的生命添上新意義。
06:25
So, never feel guilty有罪
about using運用 this tissue組織."
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請不要因為採用
這些組織而內疚。」
06:29
Next下一個, she explained解釋 to me how rare罕見 it was.
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跟著她向我解釋
那些組織非常罕有
06:32
She had placed放置 a request請求
for this tissue組織 six years年份 earlier
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她早在6年前已向
國家疾病交流硏究院
06:36
with the National國民 Disease疾病
Research研究 Interchange立交.
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要求採用這些組織
06:39
She got only one sample樣品 of tissue組織
that fit適合 her criteria標準,
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最後只得一個組織樣本
符合她的要求
06:42
and it was Thomas's托馬斯的.
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那就是湯瑪斯的組織
06:44
Next下一個, we arranged安排 a date日期 for me
to come visit訪問 the lab實驗室,
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其後我們安排了日子到訪實驗室
06:48
and we chose選擇 March遊行 23, 2015,
which哪一個 was the twins'雙胞胎“ fifth第五 birthday生日.
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選擇了2015年3月23日,
那天是雙胞胎的5歲生日。
06:54
After we hung up, I emailed電子郵件 her
some pictures圖片 of Thomas托馬斯 and Callum卡勒姆,
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掛線後,我電郵了幾張
雙胞胎照片給她
06:58
and a few少數 weeks later後來,
we received收到 this T-shirtT恤衫 in the mail郵件.
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數星期後,我收到這件
郵寄送來的T恤
07:03
A few少數 months個月 later後來, Ross羅斯, Callum卡勒姆
and I piled in the car汽車
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再過幾個月後,魯斯、卡勒姆和我
07:05
and we went for a road trip.
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一起擠進車子踏上旅程。
07:07
We met會見 ArupaArupa and her staff員工,
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我們跟Arupa和她的職員見面
07:10
and ArupaArupa said that when I told her
not to feel guilty有罪, that it was a relief浮雕,
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Arupa 說當我叫她不要內疚時,
她不禁舒了一口氣
07:14
and that she hadn't有沒有 seen看到 it
from our perspective透視.
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還提到她沒有顧及我們的想法
07:18
She also explained解釋 that Thomas托馬斯
had a secret秘密 code name名稱.
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她告訴我們湯瑪斯有一個密碼名字
07:22
The same相同 way Henrietta亨麗埃塔 Lacks缺乏
is called HeLa海拉,
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就像海莉耶塔.拉克斯叫海拉一樣
07:26
Thomas托馬斯 was called RESRES 360.
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湯瑪斯叫做 RES 360
07:29
RESRES means手段 research研究,
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RES 的意思是硏究
07:30
and 360 means手段 he was the 360th specimen標本
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360 代表研究的十年過程中
07:34
over the course課程 of about 10 years年份.
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他是第360個標本
07:37
She also shared共享 with us a unique獨特 document文件,
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她還讓我們看一份不尋常的文件。
07:41
and it was the shipping運輸 label標籤
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那是一張船運標記
07:43
that sent發送 his retinas視網膜
from DCDC to Philadelphia費城.
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表示湯瑪斯的視網膜
從華盛頓送到費城
07:48
This shipping運輸 label標籤
is like an heirloom傳家寶 to us now.
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現在這個標記仿彿
成為我們的傳家寶
07:52
It's the same相同 way that a military軍事 medal勳章
or a wedding婚禮 certificate證書 might威力 be.
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等同軍事獎章或結婚證書
07:56
ArupaArupa also explained解釋 that she is using運用
Thomas's托馬斯的 retina視網膜 and his RNARNA
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Arupa還說她正在利用
湯瑪斯的視網膜和RNA
08:02
to try to inactivate滅活 the gene基因
that causes原因 tumor formation編隊,
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試圖阻止那些形成腫瘤的基因活動
08:05
and she even showed顯示 us some results結果
that were based基於 on RESRES 360.
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她甚至給我們看根據 RES 360
硏究得到的結果
08:09
Then she took us to the freezer冰箱
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跟著她帶我們往冷涷櫃
08:11
and she showed顯示 us the two samples樣本
that she still has
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然後展示兩個她一直保存的樣本
08:15
that are still labeled標記 RESRES 360.
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仍舊標示 RES 360
08:17
There's two little ones那些 left.
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那裡剩下兩個小小的樣本
08:19
She said she saved保存 it
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她說她保存下來
08:21
because she doesn't know
when she might威力 get more.
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因為她還未知道何時
或會有更多收穫。
08:24
After this, we went to the conference會議 room房間
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其後我們到了會議室
08:26
and we relaxed輕鬆 and we had lunch午餐 together一起,
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大家休息一會,然後吃午飯
08:29
and the lab實驗室 staff員工 presented呈現 Callum卡勒姆
with a birthday生日 gift禮品.
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接著職員送給卡姆勒一份生日禮物。
08:34
It was a child's孩子的 lab實驗室 kit套件.
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那是一份兒童實驗室工具包
08:36
And they also offered提供 him an internship實習.
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還聘請他做實習生。
08:38
(Laughter笑聲)
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(笑聲)
08:42
So in closing關閉, I have two
simple簡單 messages消息 today今天.
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最後我今天帶來兩個簡單的信息
08:45
One is that most of us probably大概
don't think about donating捐贈 to research研究.
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一是大多數人不會想到
捐贈器官作硏究
08:49
I know I didn't.
I think I'm a normal正常 person.
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我知道我以前一定不會
因為我認為自己是個普通人
但我已經捐贈出來了。
08:52
But I did it.
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08:53
It was a good experience經驗,
and I recommend推薦 it,
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那是一次很好的經歷,我樂意推薦
08:55
and it brought my family家庭 a lot of peace和平.
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它讓我們一家人心情得以平伏。
08:57
And second第二 is if you work
with human人的 tissue組織
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二是如果你從事人體組織的研究
09:00
and you wonder奇蹟 about the donor捐贈者
and about the family家庭,
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想到捐贈者和他(她)的家人
09:03
write them a letter.
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寫一封信給他們
09:04
Tell them you received收到 it,
tell them what you're working加工 on,
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告訴他們你收到了和正在做什麼工作
09:07
and invite邀請 them to visit訪問 your lab實驗室,
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邀請他們來探訪你的實驗室
09:09
because that visit訪問 may可能 be
even more gratifying可喜 for you
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因為那次探訪可能令你
09:11
than it is for them.
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比他們還要高興。
09:12
And I'd also like to ask you a favor偏愛.
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我也想請求你們幫個忙
09:14
If you're ever successful成功
in arranging整理 one of these visits訪問,
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如果你們曾成功地做了
一次這樣的探訪
09:17
please tell me about it.
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請告訴我
09:20
The other part部分 of my family's家庭的 story故事
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我們家庭其餘的經歷
09:21
is that we ended結束 up visiting訪問
all four facilities設備
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就是我們探訪了那些接受
09:24
that received收到 Thomas's托馬斯的 donations捐款.
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湯瑪斯捐贈的所有四間機構
09:26
And we met會見 amazing驚人 people
doing inspiring鼓舞人心 work.
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碰到出色的人材,
做令人鼓舞的工作。
09:30
The way I see it now
is that Thomas托馬斯 got into Harvard哈佛,
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我覺得好像是湯瑪斯
進了哈佛大學
09:35
Duke公爵 and Penn佩恩 --
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社克大家和賓州大學
09:37
(Laughter笑聲)
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(笑聲)
09:40
And he has a job工作 at CytonetCytonet,
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而且他在 Cytonet 還有份工作
09:43
and he has colleagues同事 and he has coworkers合作夥伴
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他有同事和幫手
09:45
who are in the top最佳 of their fields領域.
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他們都是那行業的頂尖人物
09:47
And they need him
in order訂購 to do their job工作.
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需要湯瑪斯才能完成他們的工作
09:51
And a life that once一旦 seemed似乎
brief簡要 and insignificant微不足道
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一個曾經似乎是短暫
而微不足道的生命
09:55
revealed透露 itself本身 to be vital重要,
everlasting永恆的 and relevant相應.
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現在變得那麼重要、
永恆和意義重大
10:02
And I only hope希望 that my life
can be as relevant相應.
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我只希望我的生命變得有意義。
10:05
Thank you.
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謝謝。
10:06
(Applause掌聲)
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(掌聲)
Translated by JingZe Wu
Reviewed by Howard Chuang

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ABOUT THE SPEAKER
Sarah Gray - Researchers' dream donator
Sarah Gray found meaning in tragic loss­­ by donating the organs of her newborn son to advance scientific research.

Why you should listen

While struggling to cope with the loss of their infant son Thomas, Sarah Gray and her family met the researchers who received his eye, liver and cord blood donations. This journey garnered national and international media attention and brought profound peace to the Gray family.

Gray is the director of marketing and public affairs for the American Association of Tissue Banks and a member of the AATB Donor Family Guidance Document Committee. She is author of a forthcoming memoir from HarperOne, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science.

Gray holds a BA in Communications from Marquette University and a Masters in Public Communication from American University, where her capstone topic was non­directed kidney donation. She lives in Washington, DC with her husband Ross and children, Callum and Jocelyn.

More profile about the speaker
Sarah Gray | Speaker | TED.com