How did you tell your family and friends
about the diagnosis?

We were in America
at the time

when Ruby was diagnosed.

We had been in hopsital

a couple of weeks, almost
a month.

My family back home

knew that she was very sick,

was having uncontrollable
seizures.

It wasn't until we took
her home

and then a few weeks later

that Ruby was actually
diagnosed

with having Sandhoff disease.

I told my mum

immediately on the phone

because they were waiting,

by the phone for news.

I actually couldn't tell
anybody else

at the time.

She spread the news to
my sisters and my

immediate family and at

that time we kept it

to my immediate family.

In the US, where we were,

we told, immediate family

who were asking

but that's how far we 
kept it until

we could come to
terms with

the diagnosis.

I told my family

on the same day I got

the diagnosis.

My friends, I told a
while later

because I couldn't
talk about it.

When Isabella was first
diagonsed

we originally speak to
each member of our

family by the telephone.

We then directed them to

a website to explain more and

for them to read about it,

rather than us have to
emotionally tell them.

We had pre-warned them

of the type of diagnosis it
would be.

We, knew that Amelie had
a metabolic condition

when we were staying in
hospital.

So, we had a pretty bad diagnosis

knowing that it would be one of

seventy diseases or so.

We waited about two to three
weeks for,

blood tests that were a

bit complicated, given our DNA.

When we found out it was Tay-Sachs

we called our friends and family
to let them know.

The close people first.

Then it went by word of mouth.

We told my parents who

were there at the diagnosis,

that she had Tay-Sachs.

Then we told all of my family so

we didn't have to field
all of the phone calls

about how she was getting on.

One of my closest friends was
with me

on diagnosis day.

The rest of them I told
over the phone from

Great Ormond Street Hospital,

as we got the diagnosis.

Everybody was absolutely 
heartbroken.

Unfortunately, it was out
of our control.