Jayne Hughes and Penny Dear attended a reception held at the House of Commons on Tuesday 26th February. This was held in connection with Genetic Interest Group, MP's and scientists hoping to bring "centres of excellence" to the UK for many rare disorders including CS - the centre of excellence being developed at St. Thomas/Guys Hospital, London. Further information on this will follow in due course.
January 2008 - We are pleased to confirm that Emma Jones and the Wallasey Swimming Club raised a huge amount of £942.50 and this is received with our thanks. Five huge kisses are being sent up to heaven for 'Little Man' who passed away 16th January 2008. For legal reasons he cannot be named but his wonderful guardian is in our thoughts for the love and care you showed him in his short life of 5 years. London UK. X X X X X
CASH is rolling in for plucky Amy Garton-Hughes who is making medical history in her battle with Cockayne Syndrome.
On Sunday, teenagers from Wallasey Swimming Club splashed out to help the 16-year-old who is baffling doctors with her spirit and determination.
Amy's good friend Emma Jones raised over £200 after completing a sponsored swim at Guinea Gap Baths in Seacombe.
And money is still coming in from other members of the club with all proceeds to registered charity Amy and Friends.
Support continues to mount to fund research into the rare disease and Vauxhall, Unilever and Sony are now on board.
Globe readers have also pledged donations to help Amy receive groundbreaking treatment and after just one course of new physiotherapy, she is walking with her back almost straight.
Her hearing has gone from moderate loss to mild and mum Jayne says her well-being and contentment is much improved.
The very first CS Christmas party to bring together UK families will take place this weekend.
To donate, send your cheques made payable to Amy and Friends, c/o Wirral Globe, Haymarket Court, Hinson Street, Birkenhead, CH41 5BX.
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)
George Jeffrey Dear: 6th June 1998 - 28 February 2007.
"George touched so many hearts. We could never have imagined how many in his too short a life. So many people knew him, even strangers who had met him or people that had heard all about him instantly recognised him to be George.He brought so much joy and pleasure to so many lives"