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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  Megan was born 20th June 2006, weighing 6 lb 2. She had trouble gaining weight and at 4.5 months doctors found she had bilateral cataracts, these were then removed in december 06', weighing only around 8lb. In spring 07' Meg had a cold which made her refuse to eat and was losing weight so doctors intervened by giving her a nasal gastric tube in April 07', which has helped to a degree though has made her have bad reflux: she now weighs over 15lb aged 19 months. A skin biopsy was carried out shortly after the tubing began and the diagnosis of CS type 1 came in Aug/Sept 07'.
Meg was a happy child, loved to be sociable and 'talk' to people if they are within her vision range, fixed at around a metre due to her contact lenses. She liked to roll around on her play mat, though didn't like to stay on her front for long. Meg could hold and play with toys if they're small and light enough for her to hold, she liked toys she could bang,and also bright-colored and black & white toys. One of her favorite toys was a soft furry zebra called Zebadee, whom she took everywhere, she liked to hit, eat, strangle and 'talk' to him.  

Megan became a butterfly in July 2009 age 3.  
 

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