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Oxfordshire couple tackle London Marathon - 19/03/08

An Oxfordshire couple are taking part in the Flora London marathon on Sunday 13 April to help thousands of children with liver disease after their niece needed a life saving liver transplant.

Nicky Salomé-Bentley (52) and husband Simon (59) from Leafield, Witney, are taking part in the world famous race to raise funds for Children’s Liver Disease Foundation (CLDF), a unique national organisation dedicated to fighting all liver diseases of childhood. 

The couple learnt of CLDF’s work after niece Erica (20) who lives in Cornwall was diagnosed shortly after birth with biliary atresia, an incurable condition in which the bile ducts become progressively blocked leading to irreversible liver damage. Erica underwent a corrective operation when she was 12 weeks old but when she was 11 her condition deteriorated to the point where she needed a life-saving liver transplant. She is now doing well but must take daily medication to ensure her body does not reject the donor organ.

Throughout their ordeal Erica’s family received information and support from CLDF and Nicky and Simon were keen to raise funds to enable the charity to continue its family support, education and research programmes.  Nicky’s sister, Yvonne, from Derbyshire is also running for CLDF.

Simon, a senior library assistant at Oxford University’s Bodleian Library, says: “Few people realise that two children are diagnosed with liver disease every day in the UK through no fault of their own or their parents.   CLDF offers a lifeline to families and gives hope for the future through the research that it funds, as many conditions are currently incurable.  We really wanted to do something to help.”

Nicky, a nurse at the John Radcliffe Hospital adds: “Simon has been keen to enter the race since I took part in 2004. There is such a fantastic atmosphere and it is a great way to raise funds. We both want to beat my previous time of 5 hrs and 33 mins and I am keen not to be overtaken by a rhino this time! The most important thing is to raise as much as possible for CLDF and I hope that local people will offer their support for this wonderful charity”.

Catherine Arkley, chief executive of Children’s Liver Disease Foundation says: “The money that Nicky, Simon and Yvonne raise will help make a huge difference to thousands of families like Erica’s who are devastated by a diagnosis of childhood liver disease. CLDF enables these families to have 24/7 access to information and support whenever they need it.  However these services can only continue with public support and every penny really does make a difference.”

Anyone wishing to offer support can visit the couple’s special online sponsorship pages at www.justgiving.com/salome-leafield and www.justgiving.com/simon-leafield

For further information on the work of the Foundation, please visit www.childliverdisease.org or call 0121 212 3839.

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For further information on this story please contact

Rachel Markham, Children’s Liver Disease Foundation,
Tel: 0121 212 6012, e-mail: communications@childliverdisease.org

Jill Priest, Professional Communications,
Tel: 01886 822077 or 07940 534505, email: jill@profcomms.co.uk

Note to editors:
Children’s Liver Disease Foundation is a unique national charity that fights childhood liver diseases through funding pioneering research and educating healthcare professionals and the general public. Formed in 1980, it provides professional, emotional support to families affected and is the only organisation of its kind in the UK.

Childhood liver disease – the facts
• More children in the UK are currently diagnosed with a liver disease than childhood leukaemia
• At least two children are diagnosed with a liver disease every day in the UK
• Most childhood liver diseases are life threatening; all mean a lifetime of care
• There are over 100 different liver diseases that can affect babies, children or young people
• For most childhood liver diseases the cause is unknown
• Liver disease has no cure
• CLDF is the only organisation in the UK dedicated to stamping out childhood liver disease