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How my son's short life made a lasting difference

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    I was three months pregnant with twins
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    when my husband Ross and I
    went to my second sonogram.
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    I was 35 years old at the time,
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    and I knew that that meant
    we had a higher risk
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    of having a child with a birth defect.
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    So, Ross and I researched
    the standard birth defects,
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    and we felt reasonably prepared.
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    Well, nothing would have prepared us
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    for the bizarre diagnosis
    that we were about to face.
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    The doctor explained
    that one of our twins, Thomas,
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    had a fatal birth defect
    called anencephaly.
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    This means that his brain
    was not formed correctly
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    because part of his skull was missing.
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    Babies with this diagnosis
    typically die in utero
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    or within a few minutes, hours
    or days of being born.
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    But the other twin, Callum,
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    appeared to be healthy,
    as far as the doctor could tell,
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    and these twins were identical,
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    genetically identical.
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    So after a lot of questions about
    how this could have possibly happened,
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    a selective reduction was mentioned,
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    and while this procedure
    was not impossible,
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    it posed some unique risks
    for the healthy twin and for me,
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    so we decided to carry
    the pregnancy to term.
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    So there I was, three months pregnant,
    with two trimesters ahead of me,
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    and I had to find a way to manage
    my blood pressure and my stress.
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    And it felt like having a roommate
    point a loaded gun at you for six months.
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    But I stared down
    the barrel of that gun for so long
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    that I saw a light
    at the end of the tunnel.
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    While there was nothing we could do
    to prevent the tragedy,
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    I wanted to find a way
    for Thomas's brief life
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    to have some kind of positive impact.
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    So I asked my nurse about organ,
    eye and tissue donation.
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    She connected with our local
    organ-procurement organization,
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    the Washington Regional
    Transplant Community.
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    WRTC explained to me
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    that Thomas would probably be too small
    at birth to donate for transplant,
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    and I was shocked:
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    I didn't even know
    you could be rejected for that.
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    But they said that he would be
    a good candidate to donate for research.
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    This helped me see Thomas in a new light.
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    As opposed to just a victim of a disease,
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    I started to see him as a possible key
    to unlock a medical mystery.
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    On March 23, 2010,
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    the twins were born,
    and they were both born alive.
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    And just like the doctor said,
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    Thomas was missing
    the top part of his skull,
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    but he could nurse,
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    drink from a bottle,
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    cuddle and grab our fingers
    like a normal baby,
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    and he slept in our arms.
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    After six days, Thomas died in Ross's arms
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    surrounded by our family.
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    We called WRTC, who sent a van to our home
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    and brought him to Children's
    National Medical Center.
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    A few hours later, we got a call to say
    that the recovery was a success,
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    and Thomas's donations
    would be going to four different places.
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    His cord blood would go
    to Duke University.
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    His liver would go to a cell-therapy
    company called Cytonet in Durham.
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    His corneas would go
    to Schepens Eye Research Institute,
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    which is part of Harvard Medical School,
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    and his retinas would go
    to the University of Pennsylvania.
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    A few days later, we had a funeral
    with our immediate family,
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    including baby Callum,
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    and we basically
    closed this chapter in our lives.
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    But I did find myself wondering,
    what's happening now?
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    What are the researchers learning?
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    And was it even worthwhile to donate?
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    WRTC invited Ross and I
    to a grief retreat,
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    and we met about
    15 other grieving families
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    who had donated their loved one's
    organs for transplant.
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    Some of them had even received letters
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    from the people who received
    their loved one's organs,
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    saying thank you.
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    I learned that they
    could even meet each other
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    if they'd both sign a waiver,
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    almost like an open adoption.
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    And I was so excited,
    I thought maybe I could write a letter
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    or I could get a letter
    and learn about what happened.
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    But I was disappointed to learn
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    that this process only exists
    for people who donate for transplant.
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    So I was jealous.
    I had transplant envy, I guess.
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    (Laughter)
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    But over the years that followed,
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    I learned a lot more about donation,
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    and I even got a job in the field.
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    And I came up with an idea.
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    I wrote a letter that started out,
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    "Dear Researcher."
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    I explained who I was,
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    and I asked if they could tell me
    why they requested infant retinas
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    in March of 2010,
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    and I asked if my family
    could visit their lab.
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    I emailed it to the eye bank
    that arranged the donation,
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    the Old Dominion Eye Foundation,
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    and asked if they could
    send it to the right person.
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    They said that they had
    never done this before,
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    and they couldn't guarantee a response,
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    but they wouldn't be an obstacle,
    and they would deliver it.
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    Two days later, I got a response
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    from Dr. Arupa Ganguly
    of the University of Pennsylvania.
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    She thanked me for the donation,
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    and she explained
    that she is studying retinoblastoma,
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    which is a deadly cancer of the retina
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    that affects children
    under the age of five,
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    and she said that yes,
    we were invited to visit her lab.
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    So next we talked on the phone,
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    and one of the first things she said to me
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    was that she couldn't possibly
    imagine how we felt,
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    and that Thomas had given
    the ultimate sacrifice,
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    and that she seemed
    to feel indebted to us.
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    So I said, "Nothing against your study,
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    but we didn't actually pick it.
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    We donated to the system,
    and the system chose your study.
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    I said, "And second of all,
    bad things happen to children every day,
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    and if you didn't want these retinas,
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    they would probably
    be buried in the ground right now.
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    So to be able to participate in your study
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    gives Thomas's life
    a new layer of meaning.
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    So, never feel guilty
    about using this tissue."
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    Next, she explained to me how rare it was.
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    She had placed a request
    for this tissue six years earlier
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    with the National Disease
    Research Interchange.
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    She got only one sample of tissue
    that fit her criteria,
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    and it was Thomas's.
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    Next, we arranged a date for me
    to come visit the lab,
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    and we chose March 23, 2015,
    which was the twins' fifth birthday.
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    After we hung up, I emailed her
    some pictures of Thomas and Callum,
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    and a few weeks later,
    we received this T-shirt in the mail.
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    A few months later, Ross, Callum
    and I piled in the car
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    and we went for a road trip.
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    We met Arupa and her staff,
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    and Arupa said that when I told her
    not to feel guilty, that it was a relief,
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    and that she hadn't seen it
    from our perspective.
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    She also explained that Thomas
    had a secret code name.
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    The same way Henrietta Lacks
    is called HeLa,
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    Thomas was called RES 360.
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    RES means research,
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    and 360 means he was the 360th specimen
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    over the course of about 10 years.
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    She also shared with us a unique document,
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    and it was the shipping label
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    that sent his retinas
    from DC to Philadelphia.
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    This shipping label
    is like an heirloom to us now.
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    It's the same way that a military medal
    or a wedding certificate might be.
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    Arupa also explained that she is using
    Thomas's retina and his RNA
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    to try to inactivate the gene
    that causes tumor formation,
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    and she even showed us some results
    that were based on RES 360.
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    Then she took us to the freezer
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    and she showed us the two samples
    that she still has
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    that are still labeled RES 360.
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    There's two little ones left.
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    She said she saved it
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    because she doesn't know
    when she might get more.
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    After this, we went to the conference room
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    and we relaxed and we had lunch together,
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    and the lab staff presented Callum
    with a birthday gift.
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    It was a child's lab kit.
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    And they also offered him an internship.
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    (Laughter)
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    So in closing, I have two
    simple messages today.
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    One is that most of us probably
    don't think about donating to research.
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    I know I didn't.
    I think I'm a normal person.
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    But I did it.
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    It was a good experience,
    and I recommend it,
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    and it brought my family a lot of peace.
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    And second is if you work
    with human tissue
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    and you wonder about the donor
    and about the family,
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    write them a letter.
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    Tell them you received it,
    tell them what you're working on,
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    and invite them to visit your lab,
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    because that visit may be
    even more gratifying for you
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    than it is for them.
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    And I'd also like to ask you a favor.
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    If you're ever successful
    in arranging one of these visits,
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    please tell me about it.
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    The other part of my family's story
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    is that we ended up visiting
    all four facilities
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    that received Thomas's donations.
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    And we met amazing people
    doing inspiring work.
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    The way I see it now
    is that Thomas got into Harvard,
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    Duke and Penn --
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    (Laughter)
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    And he has a job at Cytonet,
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    and he has colleagues and he has coworkers
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    who are in the top of their fields.
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    And they need him
    in order to do their job.
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    And a life that once seemed
    brief and insignificant
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    revealed itself to be vital,
    everlasting and relevant.
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    And I only hope that my life
    can be as relevant.
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    Thank you.
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    (Applause)
Title:
How my son's short life made a lasting difference
Speaker:
Sarah Gray
Description:

After Sarah Gray's unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided to turn her family's tragedy into an extraordinary gift and donate his organs to scientific research. In this tribute to life and discovery, she shares her journey to find meaning in loss and spreads a message of hope for other grieving families.

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Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
10:17

English subtitles

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