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 ! )