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!

  Anthony Scott Bowers was born on February 4, 1994.

He was a premature baby weighing 4 pounds 12 ounces. He was a normal happy healthy baby. He was always getting into things which led to a bad accident. When he was a year and half, he pulled a hot boiling pan of water down and caused a 3rd degree burn all on his right side of his body missing his face. Then began his troubles of being in and out of the hospital for his weight. He also had a speech delay which lead him to be in a special school to help him with it by the age of 2. We also started noticing him being sensitive to the sunlight which caused severe burns on his face. No doctors around could figure out what was going on.

In 1996, we moved from Arkansas to Tulsa, Oklahoma and he began seeing Doctor Caldwell. There were several miss diagnoses including Cerebral Palsy. Around the age of 6, Dr. Caldwell ordered a skin graph to test him for Cockayne. Finally at the age of 7 we found out what was going on. So from 2001 it has been a learning process to cater to his needs.
In 2004, he was riding on a bicycle with a neighbor, which led into a bad bike accident and he was life lighted to St. Francis Hospital. He was bleeding inside his head and it was the scariest 10 days of our lives, not knowing what the outcome was going to be but he fought through it.

Soon after his bike accident, he started having seizures. In 2007, he completely lost his hearing, so we signed up for the Cochlear. From 2007 to February 2008, he was wearing hearing aids. In 2009, he had to start using a walker to walk because he has lost his ability to walk all together. Now he is a fun loving boy that enjoys life. Everywhere he goes, everyone knows and loves him.

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

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