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AFC Liverpool proud to support ‘Amy and Friends’ Charity

Amy and Friends is a locally based charity that supports children and young
adults that suffer from a dna repair disorder called Cockayne Syndrome (CS).
CS is a neurodegenerative disorder that leads to premature ageing and,
sadly, early death.

The charity was set up when a local girl called Amy was unable to get a diagnosis in the UK and, as she began to deteriorate, her family raised funds to fly her to America where she was finally diagnosed with the condition. Amy now cannot walk unaided, her speech is deteriorating, she has chronic kidney failure, diabetes, seriously high blood pressure, a brain tumor amongst many other problems. Despite all of this, once she gets to know you she loves you wholeheartedly and laughs and smiles as if there isn’t a care in the world. When asked if she is sad to have this illness she replies ‘no, I can help other children’…..

When Amy’s family returned to the UK following her diagnosis they made up their minds to find others suffering with CS and so - the search began! Now, five years later, Amy and Friends support over 50 families in the UK and many others all over the world. They raise much needed funding to hold an annual family/medical conference which they call their ‘retreat’. For the first - and maybe the last - time children meet someone else who looks like them and the feeling of love between them shines out for everyone to see. Parents feel that at last ‘they are where they belong’ and gain a huge sense of being with a family who understand. Siblings feel like ‘no one is staring’ and they can just be themselves. Our next ‘retreat’ is this July.

We organise a Mum’s and a Dad’s day out so that parents can have a break - even for just one day - together we laugh, cry, remember those children that have passed away and share information and ideas for those whose child is suffering. The Dads find it hard to talk about - but when they are together they have the chance to bond and feel a sense of ‘brotherhood’.

This year we are hoping to be able to provide a siblings weekend. Brothers and sisters sometimes feel ‘left out’ and so we give them chance to have fun!

We were lucky to receive some funding from a family who lost a son, George, aged 8. This paid for a part time Family Support Worker who is an angel….she spends time with sick children, their siblings, gives parents a well earned break and recently sat with an 11 month old little girl who lay dying in her arms whilst her Mum was in labour.

We buy equipment for children - ipads for those children losing their speech or hearing, walking frames for those losing their ability to walk and sensory toys for those who have lost their sight.

We aid research both with doctors overseas and have made a huge step forward in the UK recently.

CS comes in different types, severe means that the child will live - on average to age 4 - middle the child will live - on average to age 10 and the last type - on average to age 22. Each child has unimaginable suffering but to the end smiles.

Please visit our website at http://amyandfriends.org/ and see if you can help - if you can spare a few minutes - click on ‘About Friends’, chose a child and read their brave story. If you can make any free time we would love volunteers who ‘make a big difference to little lives’ - or join us on Face book and help us to raise awareness.


Posted by:  karlos         Date:  May 24, 2011         Popularity:  459 views

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