Derick was born 12/04/03, his
height is 37" and he weighs 25lbs.
diagnosed with Cockayne syndrome when he was 5 ½ years
old. At birth Derick had already survived Gestational
Diabetes and fighting with his cord that was wrapped
around his neck. He weighed 5lbs. 15oz. & was 19” long.
For the first four months Derick had a hard time eating
and keeping his food down but slowly we found what worked
best for him. At 14 months our Doctor mentioned that
they had decided to give him the diagnosis of failure to
thrive. We knew he wasn't doing the same things as the
other children his age but we didn’t know that he was that
far behind, and a “Diagnosis” that was to come much later.
He has also had eye surgery for eye alignment
tracking issues, oral surgery and hip surgery. After
several misdirected attempts to diagnose Derick, we
finally were told about CS. Dericks Grandmother did
her research and thought it was this a year prior to
the doctors. Our second neurologist took his file to
a conference and shared it as a group case to be
reviewed. Forty medical professionals from several
different fields narrowed down the list and arrived
98% sure that this child had Cockayne Syndrome.
was added to his file as a note.
Before the neurologist could inform
us of his finds at our next
appointment the Geneticist broke the
news over the phone unaware that we
had not been told in person. It
doesn't matter how long it takes to
be diagnosed or how you are given
the news. No matter what life
changes but it still remains the
same. We spend our days overcoming
the next hurdle and loving our child
the way he needs to be the same
thing we did yesterday and what we
will do tomorrow.
Derick wears hearing aids in both
ears, 2 stage AFOs and sometimes uses a walker. Every
morning he gets covered with sunscreen SPF +100 which I
call getting his ghosty on. During the week Derick loves
his visits with his physical, occupational, and speech
therapist. He rides the bus to school and with the help of
the aids attends physical education classes with his
peers. He is the ambassador for the special needs class
and visits other classes often to show the other students
it is ok to be different. When he is home he fights with
his younger brother who is taller and weighs twice as much
as he does. It is hard to keep him home because he is a
people watcher and wants to love on anyone and everyone he
meets. He will never know the meaning of the word
stranger. Even though we live in Arizona and it is sunny
all the time, Derick loves to play outside. We have to
keep the doors locked at all times since he has learned
the art of escape.