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How did you tell your family and friends
about the diagnosis?
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We were in America
at the time
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when Ruby was diagnosed.
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We had been in hopsital
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a couple of weeks, almost
a month.
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My family back home
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knew that she was very sick,
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was having uncontrollable
seizures.
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It wasn't until we took
her home
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and then a few weeks later
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that Ruby was actually
diagnosed
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with having Sandhoff disease.
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I told my mum
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immediately on the phone
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because they were waiting,
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by the phone for news.
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I actually couldn't tell
anybody else
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at the time.
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She spread the news to
my sisters and my
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immediate family and at
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that time we kept it
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to my immediate family.
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In the US, where we were,
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we told, immediate family
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who were asking
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but that's how far we
kept it until
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we could come to
terms with
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the diagnosis.
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I told my family
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on the same day I got
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the diagnosis.
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My friends, I told a
while later
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because I couldn't
talk about it.
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When Isabella was first
diagonsed
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we originally speak to
each member of our
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family by the telephone.
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We then directed them to
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a website to explain more and
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for them to read about it,
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rather than us have to
emotionally tell them.
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We had pre-warned them
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of the type of diagnosis it
would be.
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We, knew that Amelie had
a metabolic condition
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when we were staying in
hospital.
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So, we had a pretty bad diagnosis
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knowing that it would be one of
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seventy diseases or so.
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We waited about two to three
weeks for,
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blood tests that were a
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bit complicated, given our DNA.
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When we found out it was Tay-Sachs
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we called our friends and family
to let them know.
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The close people first.
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Then it went by word of mouth.
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We told my parents who
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were there at the diagnosis,
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that she had Tay-Sachs.
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Then we told all of my family so
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we didn't have to field
all of the phone calls
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about how she was getting on.
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One of my closest friends was
with me
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on diagnosis day.
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The rest of them I told
over the phone from
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Great Ormond Street Hospital,
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as we got the diagnosis.
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Everybody was absolutely
heartbroken.
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Unfortunately, it was out
of our control.
The CATS Foundation
