Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.
  • Home
  • About CS
  • News
  • Events
  • My Time to Be Me
  • Butterfly Trees
  • Angels
  • Contacts

Please make a donation by clicking here!
Follow us on Facebook!
Follow us on Twitter!
Follow us on Youtube!
Roald Dahl’s Marvellous Children’s Charity

Morgan Foundation Winner 2012
IMPORTANT DRUG INFORMATION

Metronidazole (also known as Flagyl® or Metrolyl®) may cause acute liver failure in children with Cockayne syndrome and should be avoided. Please alert your doctors to this.

Health professionals can obtain further information from Dr. Brian Wilson, Newcastle University (
brian.wilson@ncl.ac.uk). Any further drug reactions in this patient group should be reported to the regulatory authorities in your own country. Please also inform the Cockayne Syndrome Natural History study based at Newcastle University using the e-mail address above.
Welcome to Amy and Friends - Cockayne Syndrome Support

Patron - Lord Ward-Atherton of Witley & Hurcott

Who are Amy and Friends?

Our group was formed to facilitate the support of children and families suffering from Cockayne Syndrome (CS). Our group consists of CS sufferers, their parents and siblings, their extended families, family friends, representatives from medical disciplines, non medical therapists and other interested parties. We organise meetings for group members to share experiences, knowledge and to gain support from each other. We assist families in attending other support opportunities and taking part in CS research programmes. Sufferers and families are able to meet others in similar situations to themselves, perhaps for the first time ever. This makes them feel less isolated and helps them to learn more about this illness. Families who have lost children can meet with someone who has shared their experience in the knowledge that their child will never be forgotten.

For those of you who are unfamiliar with Cockayne Syndrome – where shall we start .... CS is a premature ageing disorder that leads to a shortened life expectancy. There are varying degrees of this syndrome.

Each child has a look of one another regardless of the type and each one has a loving, happy nature. Amy and her friends reach out to your heart, capture it and you will never forget that you have met them and they you.

Having spoken to parents of this terrible illness it is apparent that each one is filled with sorrow at a life that should have been, at misunderstanding from the world around us. All our children bring meaning to life and the simple joy that is found in a smile, a touch, maybe at step taken and that they were brought to us for even a short while.

This is Amy and Friends world, Amy and Friends lives and WOW what lives they’ve had! So share it with us and understand our Cockayne world.

A big congratulations to Amy who won the Against all Odds award from The Morgan Foundation!☺

Cockayne Syndrome
 

   
Please make a donation by clicking here!
Name:
E-mail:
Message:
 
 

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