Was it difficult to
get support?
We were very quickly
offered different types
of support from within
our community.
Different activities for
Isabella to be involved with
in the home with the
community nursing team.
From our point
of view
there was a lot of
support very quickly.
I think throughout the
process, the community
support, be it from the
nursing team or the doctors
or from the hospice has
been really good,
really helpful.
We have now chosen
what aspects we wanted
and what we didn't want
and what worked well
for us.
At the beginning
I did everything by
myself.
It was a little difficult.
The medical teams in America
were very good.
That's where we were
initially.
They were very good at
the medical side
but they weren't so good
at supporting the child
in the home, with therapies
and physio.
There wasn't much community
support where we were.
When we came back to the UK
we had more community help
like in the hospice, physio,
occupational therapy and that
kind of thing.
That really helped. It was a
big difference for us, personally.
But also they weren't, there
was the NTSAD in the states
but when we came back to the UK
there was a difference between
the support we got from them
and The CATS Foundation.
We just seem a more close
knit support network here.
It took me a long search.
It did take a long search.
I was given websites from
the hospital.
Forums that people hadn't
been on since 2007
which to me is ludicrous.
So, I then searched again
on the internet
and found The CATS Foundation