Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

Please make a donation by clicking here!
Follow us on Facebook!
Follow us on Twitter!
Follow us on Youtube!

  Derick was born 12/04/03, his height is 37" and he weighs 25lbs.

Derick was diagnosed with Cockayne syndrome when he was 5 ˝ 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. This 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.

   
Please make a donation by clicking here!
Name:
E-mail:
Message:
 
 

Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746