How long did it take you to come to terms with a diagnosis?

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.