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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Our first year 2007.

After experiencing our first retreat in Boston (USA) Amy and her family were overwhelmed by feelings of belonging (at last!) and met some of the worlds most wonderful people.

Amy's mum was told of families in the UK (to her amazement) as she thought that they were on their own. Jayne was then determined to get everyone to meet and set about fund raising money to bring everyone together.

New families were discovered and in total there were fifteen families in the UK, some of whom had never met another Cockayne Syndrome child just as Amy's and her family hadn't for fourteen years of her life.

In July of 2007 everyone was brought together in The Village Hotel, Brombrough (not far from Chester). Everyone had a amazing time with lots of hugs, laughter and fun but most of all love and belonging.

The two wonderful doctors flew over from Boston (USA) to meet the children and to enrol them on trials to help not only these children but those to come.
  Amy and Nick with MD Productions - dancers from Britain's Got Talent (ITV) 2007
MD Productions with Shane, Nick, Amy and Dr. Edward Neilan who flew all the way over from Boston to see our kids - blue shirt bottom left.  

Amy and Friends taking the stage at Greenacres Farm

Stars of the show - Rebecca Snowdon and Amy with Jayne (Amy's Mum)


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