Who did you turn to
for support?

The CATS Foundation.

Was my first port
of call.

I look up on the internet

and found the website
for the charity

and emailed Daniel
and got a response quickly.

They put me in contact
with quite a few people

with Tay-Sachs, parents
and their children.

We, fairly quickly got
in touch with

Daniel and Patricia.

There wasn't anyone
prior to that to talk to.

Initially I wanted to 
keep to myself.

I didn't want to meet
other people

with a Sandhoff affected
child.

But first, Alex in Australia.

Then, slowly I put the
feelers out, mostly

through the internet because

there didn't seem to 
be anyone local

either in the US or where
we were in England.

Slowly I found the Facebook group

and from there I found
The CATS Foundation

and those people, rather than
the medical teams

I turned to for support

because they were families
who were living

with the diseases and
they knew and had better

advice and more experience

and I felt more comfortable
with them.

My mother, she was 
my strength.

We turned together 
for support.

We are very close as a couple

and we faced some difficulties

with those around us.

So, originally we just turned
to each other for support

and then we had the medical
community around us.

Slowly, friends and even parents
from other children affected

by Tay-Sachs became part of
our support network.

The Tay-Sachs and Sandhoff
community

is very close knit.

So, everyone is there for each other
and helps you with

any problems you may have.

I think that really helped us.

In terms of support, asking
questions and helping us through

the darker days at the beginning.

We like to think we can now
support the newly

affected families.