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!

  Elias has born in 2006 and diagnosed CS in 2008. Our family consists of mother Titta, father Petri and big brother Eino. We live in Finland where Elias is our only CS child. Elias spends time in the day care and loves his nanny and other kids there. Elias likes other children and always wants to hug them. He blows a kiss easily to people who he likes.

Elias has had a feeding tube fitted in 2010 and he weights about 10 kg and height is about 85cm. His eyes are very sensitive for light and skin is sensitive for UV-light. Elias can hear normally. He doesn't move himself, so he can't walk or crawl.
Elias is very active to detect things and places at home eg. cupboards. He very impatiently sets the table so that he sits in his chair and together we move dishes one by one onto the table. Elias is loved by all that meet him, including every one from the Amy and Friends retreat 2010.

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

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

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