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

Sarah Gray: Como a curta vida de meu filho fez a diferença

Filmed:
1,543,224 views

Após seu filho Thomas, ainda no útero, ser diagnosticado com anencefalia, uma condição terminal, Sarah Gray decidiu transformar sua tragédia familiar em um presente extraordinário e doou os órgãos de Thomas para pesquisa. Neste tributo à vida e à descoberta, ela compartilha sua jornada em busca de significado na perda e deixa uma mensagem de esperança para outras famílias em luto.
- 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 pregnant with twins
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Estava no terceiro mês
da gestação de gêmeos
00:16
when my husband Ross and I
went to my second sonogram.
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quando meu marido Ross e eu fomos
fazer meu segundo ultrassom.
00:21
I was 35 years old at the time,
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Eu tinha 35 anos na época
00:23
and I knew that that meant
we had a higher risk
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e sabia que isto significava
um risco maior
de ter um filho com um defeito congênito.
00:26
of having a child with a birth defect.
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00:29
So, Ross and I researched
the standard birth defects,
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Então, Ross e eu pesquisamos
as doenças mais comuns
00:32
and we felt reasonably prepared.
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e nos sentimentos bem preparados.
00:35
Well, nothing would have prepared us
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Bem, nada teria nos preparado
00:37
for the bizarre diagnosis
that we were about to face.
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para o diagnóstico que logo receberíamos.
00:42
The doctor explained
that one of our twins, Thomas,
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O médico nos explicou
que um dos gêmeos, Thomas,
00:45
had a fatal birth defect
called anencephaly.
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tinha um defeito fatal
chamado anencefalia.
00:49
This means that his brain
was not formed correctly
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Isto significa que seu cérebro
não se formou corretamente
00:52
because part of his skull was missing.
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porque faltava parte do seu crânio.
Os bebês com este tipo de diagnóstico
geralmente vêm a falecer no útero
00:55
Babies with this diagnosis
typically die in utero
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00:59
or within a few minutes, hours
or days of being born.
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ou nos primeiros minutos,
horas ou dias após o nascimento.
01:05
But the other twin, Callum,
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Mas o outro gêmeo, Callum,
01:08
appeared to be healthy,
as far as the doctor could tell,
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aparentava ser saudável
até onde o médico podia afirmar.
01:12
and these twins were identical,
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Eram gêmeos idênticos, geneticamente.
01:16
genetically identical.
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01:20
So after a lot of questions about
how this could have possibly happened,
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Após muitas perguntas sobre
como isto poderia ter acontecido,
01:24
a selective reduction was mentioned,
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mencionou-se realizar
uma redução seletiva.
01:27
and while this procedure
was not impossible,
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Apesar desse procedimento
não ser impossível,
01:30
it posed some unique risks
for the healthy twin and for me,
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apresentava certos riscos
para minha saúde e a do outro bebê,
01:35
so we decided to carry
the pregnancy to term.
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então decidimos levar
a gravidez até o fim.
01:39
So there I was, three months pregnant,
with two trimesters ahead of me,
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Lá estava eu, grávida de três meses,
com dois trimestres à frente,
01:43
and I had to find a way to manage
my blood pressure and my stress.
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tentando controlar minha
pressão sanguínea e o estresse.
01:49
And it felt like having a roommate
point a loaded gun at you for six months.
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Era como ter alguém apontando
uma arma carregada por seis meses.
01:55
But I stared down
the barrel of that gun for so long
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Mas olhei para dentro do cano
daquela arma por tanto tempo
que acabei vendo uma luz no fim do túnel.
02:00
that I saw a light
at the end of the tunnel.
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Apesar de não haver nada a ser
feito para prevenir esta tragédia,
02:03
While there was nothing we could do
to prevent the tragedy,
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02:06
I wanted to find a way
for Thomas's brief life
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quis encontrar um meio
para que a curta vida de Thomas
02:09
to have some kind of positive impact.
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pudesse causar um impacto positivo.
02:11
So I asked my nurse about organ,
eye and tissue donation.
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Então, perguntei a minha enfermeira
sobre doação de órgãos, olhos e tecido.
02:16
She connected with our local
organ-procurement organization,
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Ela me conectou
com o banco de órgãos local,
02:19
the Washington Regional
Transplant Community.
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a Washington Regional
Transplant Community.
02:23
WRTC explained to me
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A WRTC explicou
02:25
that Thomas would probably be too small
at birth to donate for transplant,
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que Thomas provavelmente nasceria
pequeno demais para doar para transplante.
02:30
and I was shocked:
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Fiquei chocada! Nunca imaginei que seria
possível ser rejeitado para doação.
02:31
I didn't even know
you could be rejected for that.
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02:33
But they said that he would be
a good candidate to donate for research.
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No entanto, disseram que ele seria
um bom candidato para pesquisa.
Isso me ajudou a ver Thomas
sob uma nova perspectiva.
02:38
This helped me see Thomas in a new light.
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02:40
As opposed to just a victim of a disease,
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Ao invés de vítima de uma doença,
02:43
I started to see him as a possible key
to unlock a medical mystery.
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passei a vê-lo como uma possível
solução para um mistério médico.
02:48
On March 23, 2010,
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Em 23 de março de 2010,
02:51
the twins were born,
and they were both born alive.
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ambos os gêmeos nasceram vivos.
02:55
And just like the doctor said,
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E bem como o médico havia dito,
02:57
Thomas was missing
the top part of his skull,
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Thomas não tinha a parte
superior do crânio,
03:00
but he could nurse,
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mas ele conseguia mamar,
03:02
drink from a bottle,
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alimentar-se por mamadeira,
03:03
cuddle and grab our fingers
like a normal baby,
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abraçar e segurar nossos dedos
assim como um bebê normal.
03:07
and he slept in our arms.
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E dormia em nossos braços.
03:10
After six days, Thomas died in Ross's arms
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Após seis dias, Thomas
faleceu nos braços de Ross,
03:13
surrounded by our family.
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rodeado pela nossa família.
03:16
We called WRTC, who sent a van to our home
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Ligamos para a WRTC, a qual enviou
um furgão à nossa casa
03:21
and brought him to Children's
National Medical Center.
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e o levou para o Children's
National Medical Center.
03:24
A few hours later, we got a call to say
that the recovery was a success,
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Algumas horas mais tarde, avisaram-nos
que a coleta dos órgãos fora um sucesso
03:28
and Thomas's donations
would be going to four different places.
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e as doações de Thomas teriam
quatro destinos diferentes:
o sangue do cordão umbilical
iria para a Universidade Duke;
03:32
His cord blood would go
to Duke University.
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03:35
His liver would go to a cell-therapy
company called Cytonet in Durham.
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seu fígado, para a empresa Cytonet,
especialista em terapia celular em Durham;
03:40
His corneas would go
to Schepens Eye Research Institute,
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suas córneas, para o Schepens
Eye Research Institute,
03:43
which is part of Harvard Medical School,
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parte da Faculdade de Medicina de Harvard;
03:45
and his retinas would go
to the University of Pennsylvania.
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e suas retinas, para
a Universidade da Pensilvânia.
03:50
A few days later, we had a funeral
with our immediate family,
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Alguns dias depois, fizemos
um funeral com familiares próximos,
03:54
including baby Callum,
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incluindo Callum,
03:56
and we basically
closed this chapter in our lives.
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e basicamente encerramos
esse capítulo de nossas vidas.
Mas me peguei pensando:
o que estará acontecendo agora?
03:59
But I did find myself wondering,
what's happening now?
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O que os pesquisadores estarão aprendendo?
04:03
What are the researchers learning?
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04:05
And was it even worthwhile to donate?
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Valeu mesmo a pena doar?
04:09
WRTC invited Ross and I
to a grief retreat,
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A WRTC nos convidou para um retiro de luto
04:12
and we met about
15 other grieving families
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e encontramos cerca de 15 famílias
que haviam doado os órgãos
de seus entes queridos para transplante.
04:15
who had donated their loved one's
organs for transplant.
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Alguns haviam até recebido
cartas de agradecimento
04:19
Some of them had even received letters
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04:21
from the people who received
their loved one's organs,
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daqueles que receberam
os órgãos dos seus entes.
04:24
saying thank you.
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Descobri que poderiam até se encontrar,
se assinassem uma renúncia de direitos,
04:27
I learned that they
could even meet each other
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04:29
if they'd both sign a waiver,
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quase como uma adoção aberta.
04:30
almost like an open adoption.
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Fiquei muito entusiasmada,
pois pensei que poderia escrever
04:32
And I was so excited,
I thought maybe I could write a letter
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ou receber uma carta
e descobrir o que aconteceu.
04:35
or I could get a letter
and learn about what happened.
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Fiquei decepcionada
ao saber que esse processo
04:38
But I was disappointed to learn
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04:39
that this process only exists
for people who donate for transplant.
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somente existe para pessoas
que doaram para transplante.
04:43
So I was jealous.
I had transplant envy, I guess.
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Então fiquei com ciúmes. Acho
que tive inveja dos transplantes.
04:46
(Laughter)
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(Risos)
Mas nos anos seguintes,
04:48
But over the years that followed,
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04:50
I learned a lot more about donation,
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aprendi muito sobre doações de órgãos
04:52
and I even got a job in the field.
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e até consegui um trabalho nessa área.
04:54
And I came up with an idea.
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Foi quando tive uma ideia.
04:57
I wrote a letter that started out,
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Escrevi uma carta que começava:
"Prezado pesquisador".
04:59
"Dear Researcher."
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05:02
I explained who I was,
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Expliquei quem era
05:04
and I asked if they could tell me
why they requested infant retinas
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e perguntei se poderiam me dizer
porque solicitaram retinas de uma criança
05:08
in March of 2010,
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em março de 2010,
05:10
and I asked if my family
could visit their lab.
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e se poderíamos visitar
o laboratório deles.
05:13
I emailed it to the eye bank
that arranged the donation,
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Enviei um e-mail ao banco
de olhos que organizou a doação,
05:17
the Old Dominion Eye Foundation,
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a Old Dominion Eye Foundation,
e perguntei se poderiam enviar
a carta para a pessoa certa.
05:19
and asked if they could
send it to the right person.
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05:22
They said that they had
never done this before,
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Disseram nunca ter feito isto antes
e que não poderiam garantir uma resposta,
05:24
and they couldn't guarantee a response,
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05:26
but they wouldn't be an obstacle,
and they would deliver it.
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mas que não seria um obstáculo
e que a entregariam.
05:30
Two days later, I got a response
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Dois dias depois, recebi um e-mail
05:32
from Dr. Arupa Ganguly
of the University of Pennsylvania.
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da Doutora Arupa Ganguly
da Universidade da Pensilvânia.
05:36
She thanked me for the donation,
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Ela me agradeceu pela doação
05:38
and she explained
that she is studying retinoblastoma,
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e me explicou que está
estudando retinoblastoma,
05:41
which is a deadly cancer of the retina
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um câncer de retina fatal que afeta
crianças com menos de cinco anos.
05:42
that affects children
under the age of five,
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Ela disse sim, que estávamos
convidados a visitar seu laboratório.
05:45
and she said that yes,
we were invited to visit her lab.
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05:48
So next we talked on the phone,
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Logo conversamos por telefone
05:50
and one of the first things she said to me
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e uma das primeiras
coisas que ela me disse
foi que não conseguia imaginar
como tínhamos nos sentido,
05:52
was that she couldn't possibly
imagine how we felt,
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05:55
and that Thomas had given
the ultimate sacrifice,
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que Thomas havia feito
o maior sacrifício de todos
05:57
and that she seemed
to feel indebted to us.
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e que ela sentia ter uma dívida conosco.
Então eu disse: "Nada contra sua pesquisa,
06:00
So I said, "Nothing against your study,
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06:03
but we didn't actually pick it.
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mas, na verdade, não a escolhemos.
06:05
We donated to the system,
and the system chose your study.
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Doamos para o sistema
e o sistema a escolheu.
06:09
I said, "And second of all,
bad things happen to children every day,
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Além disso, fatalidades
acontecem a crianças todos dias,
06:14
and if you didn't want these retinas,
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e se você não quisesse essas retinas,
06:16
they would probably
be buried in the ground right now.
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elas provavelmente estariam enterradas.
06:18
So to be able to participate in your study
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Então, poder participar da sua pesquisa
06:22
gives Thomas's life
a new layer of meaning.
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deu um propósito novo à vida de Thomas.
06:25
So, never feel guilty
about using this tissue."
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Portanto, nunca sinta-se
culpada por usar esse tecido".
06:29
Next, she explained to me how rare it was.
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Em seguida, explicou-me o quão raro era.
06:32
She had placed a request
for this tissue six years earlier
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Ela havia solicitado
esse tecido seis anos antes
06:36
with the National Disease
Research Interchange.
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ao National Disease Research Interchange.
06:39
She got only one sample of tissue
that fit her criteria,
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Ela conseguiu somente um exemplar
que se encaixava nos critérios,
06:42
and it was Thomas's.
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e era o de Thomas.
06:44
Next, we arranged a date for me
to come visit the lab,
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Então, agendamos uma data
para minha visita ao laboratório.
06:48
and we chose March 23, 2015,
which was the twins' fifth birthday.
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Escolhemos 23 de março de 2015,
o dia do quinto aniversário dos gêmeos.
06:54
After we hung up, I emailed her
some pictures of Thomas and Callum,
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Após desligarmos, enviei a ela
algumas fotos de Thomas e Callum.
06:58
and a few weeks later,
we received this T-shirt in the mail.
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Algumas semanas depois,
recebemos está camiseta pelo correio.
07:03
A few months later, Ross, Callum
and I piled in the car
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Meses depois, Ross, Callum e eu nos
amontoamos no carro e pegamos a estrada.
07:05
and we went for a road trip.
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07:07
We met Arupa and her staff,
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Conhecemos Arupa e sua equipe.
07:10
and Arupa said that when I told her
not to feel guilty, that it was a relief,
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Arupa disse que, quando falei para ela
não se sentir culpada, foi um alívio
07:14
and that she hadn't seen it
from our perspective.
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e que não tinha encarado
a história sob a nossa perspectiva.
07:18
She also explained that Thomas
had a secret code name.
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Também explicou que Thomas
tinha um codinome secreto.
07:22
The same way Henrietta Lacks
is called HeLa,
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Da mesma forma que Henrietta
Lacks é chamada de HeLa,
07:26
Thomas was called RES 360.
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Thomas era chamado de RES 360.
RES significa pesquisa
07:29
RES means research,
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07:30
and 360 means he was the 360th specimen
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e 360, que ele era o 360º espécime
07:34
over the course of about 10 years.
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em cerca de 10 anos.
07:37
She also shared with us a unique document,
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Arupa nos mostrou também
um documento ímpar:
07:41
and it was the shipping label
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a etiqueta da remessa
07:43
that sent his retinas
from DC to Philadelphia.
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que enviou as retinas de Thomas
do Distrito de Colúmbia à Filadélfia.
07:48
This shipping label
is like an heirloom to us now.
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Esta etiqueta é uma relíquia
familiar para nós agora;
é como uma medalha militar
ou uma certidão de casamento.
07:52
It's the same way that a military medal
or a wedding certificate might be.
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07:56
Arupa also explained that she is using
Thomas's retina and his RNA
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Arupa também explicou que está usando
as retinas de Thomas e seu RNA
08:02
to try to inactivate the gene
that causes tumor formation,
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pra tentar desativar o gene
que causa a formação de tumores
08:05
and she even showed us some results
that were based on RES 360.
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e até nos mostrou alguns
resultados baseados na RES 360.
Em seguida, ela nos levou até o freezer
08:09
Then she took us to the freezer
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08:11
and she showed us the two samples
that she still has
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e nos mostrou dois exemplares
que ainda tinha rotulados RES 360.
08:15
that are still labeled RES 360.
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Há duas pequenas amostras restantes.
08:17
There's two little ones left.
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08:19
She said she saved it
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Ela disse que as guardou
por não saber quando conseguirá mais.
08:21
because she doesn't know
when she might get more.
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08:24
After this, we went to the conference room
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Então, fomos a sala de conferência
08:26
and we relaxed and we had lunch together,
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e lá descansamos e almoçamos juntos.
08:29
and the lab staff presented Callum
with a birthday gift.
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A equipe do laboratório deu
a Callum um presente de aniversário:
08:34
It was a child's lab kit.
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um kit de laboratório infantil.
Também oferecerem a ele um estágio.
08:36
And they also offered him an internship.
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08:38
(Laughter)
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(Risos)
08:42
So in closing, I have two
simple messages today.
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Para encerrar, tenho dois recados simples.
08:45
One is that most of us probably
don't think about donating to research.
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Primeiramente, muitos de nós provavelmente
não pensam em doar para pesquisa.
08:49
I know I didn't.
I think I'm a normal person.
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Eu não pensava e me considero normal.
08:52
But I did it.
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Mas o fiz. Foi ótimo e recomendo,
pois trouxe muita paz a minha família.
08:53
It was a good experience,
and I recommend it,
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2142
08:55
and it brought my family a lot of peace.
165
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1944
08:57
And second is if you work
with human tissue
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E por fim, se você lida com tecido humano
09:00
and you wonder about the donor
and about the family,
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2595
e se pergunta sobre o doador
e sua família, envie uma carta.
09:03
write them a letter.
168
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1195
Diga que recebeu a doação,
em que está trabalhando,
09:04
Tell them you received it,
tell them what you're working on,
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2816
e convide-os para visitar o laboratório,
09:07
and invite them to visit your lab,
170
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1667
porque essa visita pode ser ainda mais
gratificante pra você do que pra eles.
09:09
because that visit may be
even more gratifying for you
171
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2525
09:11
than it is for them.
172
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1231
Também quero pedir-lhes um favor.
09:12
And I'd also like to ask you a favor.
173
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1762
Se conseguirem agendar
uma visita deste tipo,
09:14
If you're ever successful
in arranging one of these visits,
174
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2959
peço que me contem.
09:17
please tell me about it.
175
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1318
09:20
The other part of my family's story
176
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1696
O restante da minha história
09:21
is that we ended up visiting
all four facilities
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2312
é que acabamos visitando
as quatro instituições
09:24
that received Thomas's donations.
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2062
que receberam as doações de Thomas.
09:26
And we met amazing people
doing inspiring work.
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2924
Conhecemos pessoas incríveis
que fazem trabalhos inspiradores.
Agora percebo que Thomas
entrou na Harvard,
09:30
The way I see it now
is that Thomas got into Harvard,
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5101
09:35
Duke and Penn --
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Duke e Penn.
09:37
(Laughter)
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3325
(Risos)
09:40
And he has a job at Cytonet,
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2368
E tem um trabalho na Cytonet
09:43
and he has colleagues and he has coworkers
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2785
e tem colegas de trabalho
que são líderes nas suas áreas
09:45
who are in the top of their fields.
185
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1761
que precisam dele
para fazerem seus trabalhos.
09:47
And they need him
in order to do their job.
186
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2571
09:51
And a life that once seemed
brief and insignificant
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4651
Uma vida que antes parecia
curta e insignificante
09:55
revealed itself to be vital,
everlasting and relevant.
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5682
revelou-se vital, duradoura e relevante.
10:02
And I only hope that my life
can be as relevant.
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2547
Só espero que minha vida
possa ser tão relevante.
10:05
Thank you.
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1151
Obrigada.
10:06
(Applause)
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594687
9728
(Aplausos)
Translated by Leonardo Vescovi
Reviewed by Custodio Marcelino

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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

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