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
























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

 

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  Amaris was born 1-23-03 in Honolulu, Hawaii while her father was gone to war. She was a healthy baby. She slept well and loved to cuddle.

We were told she had Cockayne syndrome when she was two by specialists at Texas Children Hospital. She was a strong, willful and loving little girl. She went to school, walked some, used ASL and her own language to communicate with us.

Many times she amazed medical personnel who told us she would not survive, only to see her fight her way back to us.

On August 11, 2011 she decided to join the angels and her CS cousins in heaven. She died peacefully in my arms surrounded by her family. We miss her so much and continue to speak of her every day, keeping her beautiful spirit alive.

 

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