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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The second annual retreat took place weekend 3-5th May 2008.

We were joined by both new and existing families and it was a pleasure to see everyone there. Dr. Edward Neilan and Dr. Peter Kang joined us from Boston Children's Hospital, USA, together with Prof. Alan Lehmann and Dr. Vincent Laugel. It is hoped that children from the UK can enter into the existing trial being held at Boston Children's Hospital which it is hoped will alleviate our children's tremors, tightness of muscles and make walking a little easier - things that most of us take for granted. We will continue to raise money to enable this to happen.

Meeting each other on the first day was like meeting up with your long lost friends and for the children - some of whom had never met another child like them this was an indescribably amazing feeling.  They reached out to each other with love, hugs and huge smiles - priceless.We enjoyed taking time with the doctors, then on to bowling for Dads and siblings whilst mums, grans, aunts and uncles stayed with the children having some catch up time.On Sunday we enjoyed our trip on the Mersey Ferries - thank you to Happy Days for organising this and also to the Ferries staff.

On Sunday evening our gala event was incredible.  We were joined by Family Martial Arts who put on a display for us, Irish dancers who were wonderful and then by Jim and Zita from Slapdash - your voices are fabulous and you entertained us and made the children have a fantastic time dancing along and laughing all night.
On Monday we held our remembrance service and the children lit candles for their friends in heaven and also for their new found friends in the group.

We then said our goodbyes until next time - and we can't wait for that.Special thanks to Jim Mulholland for organising such a wonderful night and to everyone else - too numerous to mention - who helped us - you helped create a weekend that will never be forgotten and we for this we thank you.

 


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