How long did it take you to
come to terms with a diagnosis
I think for us we had been
on a long journey
of tests so by the time
we had got to the diagnosis
we were already prepared for it.
So in some senses we had
come to terms with that
at that point.
So, we took the decision to
really get on and live
out life's together from
after the point of diagnosis.
It took a few months to come
to terms with the diagnosis.
We were very fortunate because
Amelie has a quick diagnosis.
She had mild symptoms.
She had only really lost the
ability to crawl
and to walk around.
There were no problems
with feeding at that time
or sleeping, or seizures.
So, it enabled us to look
into the disease.
Come to terms with what
the future held
without actually dealing
with the symptoms
at the beginning.
We had an amazing year
where she was
relatively healthy.
Although she was losing skills,
she was still able to do things.
We went on holiday's, made a lot
of experiences which looking
back, was one of the
best things.
That really helped us come
to terms with the diagnosis.
For some families it's different.
They go for months and months,
the child is losing skills
and deteriorating.
It must be very difficult, but for us
we were fortunate, in an unfortunate
situation to have such an early diagnosis
that helped us.
One week.
It was hard, the first time.
I just wanted to die, but
I love my son and he deserves
everything.
If I die, I can't help.
You don't come to terms
with it.
You just learn to live with it.
It took me several months
to accept Ruby's diagnosis.
At first I was angry and
in denial.
I wouldn't accept it.
But, slowly I started to look
on the internet
for some support and some
information
and I came across a family
in Australia.
They helped me come to
terms with what was going to happen
and they shared their advice
and the things they did.
Slowly, from that point on I
started to accept.