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!
Our medical journey will be so similar to many of the other early onset children that I won’t waste time mentioning it here. I want you to know about my kids. Ben and Hannah were perfect for each other. Ben loved his twin and she adored him. He loved his trains, books and blocks but I frequently found him lying on Hannah’s playmat playing with her. She would roll toward him and play with his hair or just watch him. When Allison came along two years later Ben had a new playmate but their play was very different. They would tumble with each other but they were always gentle with Hannah – they knew that she was special. They loved nothing better than to bring toys to Hannah and play with her. Hannah loved being the center of attention even though she never spoke a word.
At her early intervention preschool she would pull off her glasses just so the other kids would run over and push them back up for her. She was partially deaf and legally blind but knew in an instant if her daddy was in the room and would light up with a huge grin. There was a mischievous side to her too – when she was tired of being alone she would cough and listen very still. If there was no response she would cough again and listen. If there was still no response she would reflux, knowing that someone would surely come and clean her up. Messy and certainly not pretty but quite effective! She was always ready for a snuggle – just curling up and relaxing into me when I held her. Our naps together were heavenly.

Our Hannah Claire has been gone for 14 years now and I think of her everyday. I am happy to see the posts of the CS children on Facebook. I am grateful for the parents who make the journeys to the retreats and allow those of us whose CS kids have passed to hold your precious children. We are grateful for the questions parents ask us for it helps us to remember those details that begin to fade as the years pass. We are grateful for the smells and tactile sensations that bring back strong memories of holding our little ones. We are grateful to help bring understanding to parents still in the battle as it helps to bring an extra meaning to our loss. I wish all of you could have met my Hannah – she was a beautiful little gift. But believe me when I tell you that in a way you have met her! Our children are so familiar and our journeys are so similar that in a way you have met my sweet girl and all of the other CS children that proceed us to heaven. I look forward to meeting more of you in person one day soon!

Anne Hester Peters
Mom to Benjamin, Hannah, and Allison
Hannah Claire (1995-2000)

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

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