Does it help to talk to others?

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.