When Danny was born at 3:10am, he
was the most gorgeous little boy perfect in every way.
The next morning, we were told we could take him home
at 12pm just as soon as he'd had his routine eye and
Three days later we were still waiting to go
Now Danny wears hearing aids and after 3 eye
operations, wears glasses.
Not the greatest start
to his life, but he is an exceptionally happy little boy.
He's 19 months old now but he looks like a 4 or 5 month old baby.
He can't sit up yet, can't talk and just isn't growing at all, but
he's our special little boy and we all love him to bits.
had no idea what was wrong with him until someone suggested he
might have Cockayne Syndrome. We looked it up on the internet and
as soon as we read about the symptoms, we thought maybe he could
have CS but as soon as we saw the photos of the other kids with CS
we knew, we just knew !
We contacted Jayne Hughes
and she was brilliant and so helpful. Within 5 or 6 weeks we had a
definite diagnosis which was such a relief and a shock all at
We have learned that Danny has only got maybe 5 years
to live so we make the most of him every day.
As you can
see - Danny is a stunner and if you get to meet him - you'll love
him too !
Love Pete, Terri and KC/DC. ( Keightley Carhys &
Daniel Craig ! )