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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  Julie: My name is Julie. I was born in 2007 and come from Germany.

I am still without a diagnosis. But two professors in Germany are of the opinion that I am suffering with Cockayne syndrome.

Although I have many problems, I do not let it get me down. Usually I am in a good mood and laugh a lot and enjoy being with other people. Every day I go to the kindergarten, build a lot with Lego Duplo and like to paint colorful pictures.

I also love beach holiday in Denmark, listening to music and dancing with my sister using my walker. My little sister is Lya, She is two years old. We have a lot of fun together, but can also fight as well.
 My parents are very proud of me and my sister. We look forward to getting to know all of the Amy and Friends family. Maybe they can help us to get certainty. 

   
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