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.