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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  Scarlett was born 10am 7th May 2009 weighing 4lb 8oz. At approx 6.30pm that day, was taken into intensive care due to feeding problems and being shaky and having a low heart rate. Kept in care for 11 days. During this time, failed new born hearing test. At the time felt this may have been due to being born by caeserean and having birth fluid in her ears. At 4 weeks old failed hearing test again which was done at home. Had hearing done again few days later in hospital. Failed again. Was diagnosed as being profoundly deaf. As she got older, hardly put on weight and just seemed to be a long way behind in general development. Mainly put down due to the deafness. At around 8 months was put forward for cochlear implant assessment. In April found out these were not possible due to Scarletts entire inner ear being malformed. No cochlears, no auditory nerves and no balance system. All this time, Scarlett was being tested for various things to find out what was causing her lack of development. In around May/June 2010 we were told she had mild version of Cockayne Syndrome.
Scarlett is still not sitting or walking but is crawling around. Not sure how much is to do with the balance and how much with CS but she is progressing albeit slowly

I think to be honest, we found this extremely hard to come to grips with and didnt properly accept it for a few months. It was around Christmas 2010 I think we came to grips with it and thats when we contacted Jayne from Amy and Friends. I feel like I have a second family. The help and warmth that have been shown to me and my family have been overwhelming and very inspirational.

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