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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  Hannah was born on May 16, 1995 with her twin brother Ben. He was always the big brother - he was 7 pounds, 7 ounces while Hannah was a much smaller at 4 pounds, 3 ounces. The first 18 months were a discovery of issues ranging from cataracts and feeding issues to photosensitivity and an inability to sweat. Despite not meeting milestones and blazing her own trail on the growth chart, Hannah was a happy, smiling little girl. She enjoyed being around Ben and younger sister Allison.
She received speech therapy to try and lessen her oral sensitivity. She received PT/OT - she loved her therapists but hated doing the work.
She was always quick with a smile for her Daddy and learned quickly that if she flung off her glasses or hearing aids she got attention from her siblings or classmates at her special needs preschool. She was a pretty well child until her last year when she seemed to be less resistant to illness and started having occasional seizures. In January 2000 she contracted pneumonia from which she wasn't able to recover. She died peacefully with her parents on January 26, 2000. Our sweet little girl who never said a word taught us so much about love and priorities in her 4 1/2 short years. She loved and giggled and cuddled and had us all wrapped around her tiny little fingers. We miss her everyday. We are grateful to the other CS families who generously share their sweet children with us. Being able to hold another CS child helps to bring back those full sensory memories. Thank you for sharing! We love our CS family and we are so grateful to Amy and Friends and for facilitating opportunities to get together.

Hannah, Our little friend won her fight against Cockayne Syndrome and is now free to run and play in heaven.

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