Does it help to talk to others?
I do find it helps more and more.
To being with I was very isolated
and then as it went on
that support network
become a lifeline.
Questions I had about Ruby's care often the
doctors and nurses didn't really know, or were
stumbling their way through
because they hadn't seen cases of Sandhoff before.
When I turned to them for help
they were the experts.
Absolutely.
100%
I think it does help to talk
to others in a similar position
because they can really understand
what you are going through.
I think with friends and family
sometimes they try
to understand.
But, because they are not living
it day to day, 24 hours a day they
really can struggle with the small
things you find very difficult.
So, that's why we turn to the people
and friends who we have made in
the Tay-Sachs community through
The CATS Foundation.
They are people we can really
rely on for support and advice
and basically we can talk to them about anything and
they don't really mind.
I often speak to a lot of
the parents from the Tay-Sachs community.
I don't speak to all of them
and I do think that within that community
you find the ones that become
you friends that are closer to you because
of how you are and how you are dealing with the situation.
That makes it into a very normal relationship and
a normal friendship.
But, where you can talk about
things that the parents don't
particularly know or want to hear about.
It's a very big support to have on the end of an email or message
or phone call and to be able to do things together.
It's very important that you don't feel isolated.
For any one that has just been diagnosed it's really important
to find your friends within the community.
Yes, very much.
It helps to talk to other people in the same situation as us.
There are members of family and close friends
who we are able to talk to.
But, I think our biggest help
is from our close family within
our Tay-Sachs family.
I think it also helps to
share our knowledge and experiences
with new families as well.
Things that worked for us in the early days
and didn't work for us.