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Who did you turn to
for support?
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The CATS Foundation.
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Was my first port
of call.
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I look up on the internet
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and found the website
for the charity
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and emailed Daniel
and got a response quickly.
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They put me in contact
with quite a few people
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with Tay-Sachs, parents
and their children.
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We, fairly quickly got
in touch with
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Daniel and Patricia.
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There wasn't anyone
prior to that to talk to.
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Initially I wanted to
keep to myself.
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I didn't want to meet
other people
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with a Sandhoff affected
child.
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But first, Alex in Australia.
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Then, slowly I put the
feelers out, mostly
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through the internet because
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there didn't seem to
be anyone local
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either in the US or where
we were in England.
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Slowly I found the Facebook group
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and from there I found
The CATS Foundation
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and those people, rather than
the medical teams
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I turned to for support
-
because they were families
who were living
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with the diseases and
they knew and had better
-
advice and more experience
-
and I felt more comfortable
with them.
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My mother, she was
my strength.
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We turned together
for support.
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We are very close as a couple
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and we faced some difficulties
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with those around us.
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So, originally we just turned
to each other for support
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and then we had the medical
community around us.
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Slowly, friends and even parents
from other children affected
-
by Tay-Sachs became part of
our support network.
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The Tay-Sachs and Sandhoff
community
-
is very close knit.
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So, everyone is there for each other
and helps you with
-
any problems you may have.
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I think that really helped us.
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In terms of support, asking
questions and helping us through
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the darker days at the beginning.
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We like to think we can now
support the newly
-
affected families.