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2006 December 18 - Family of local ?Christmas miracle? transplant boy use celebrations to help child

The family of a Hereford boy celebrating the sixth anniversary of his life saving liver transplant and his sixth birthday this month are using the milestones to highlight the work of Children’s Liver Disease Foundation (CLDF).

Charles Tobey, who lives with mum Rachel and dad Christopher in Woolhope, was born at Hereford County Hospital on 12th December 2000.  However the family’s joy was short lived as it soon became clear that Charles was seriously ill.

Tests revealed that Charles’ liver was not functioning properly and he was transferred to the specialist liver unit at Birmingham Children’s Hospital. On Christmas Eve a diagnosis was confirmed; Charles had a liver disease called giant cell hepatitis which had damaged his liver and he would survive for no more than a week without a liver transplant. 

Charles was put on the transplant list and the desperate wait for a donor organ started.  To the family’s great relief, late on Christmas day, specialists confirmed that a liver had become available and Charles underwent the twelve hour operation on Boxing day.  Within four weeks Charles was allowed home.

Dad Christopher says, “Looking back I don’t really know how we coped, it felt like our world had fallen apart.  You never think that things like this will happen to you and we didn’t understand a lot of what was going on or what the future held. We will never forget the unique gift given to us by a very special family that Christmas.”

Throughout their time in hospital the family received support from CLDF, a unique national charity dedicated to fighting childhood liver disease.  The family are using Charles’ transplant anniversary celebrations to help raise awareness that children can be affected by liver disease – two children are diagnosed with a life threatening liver disease every day in the UK - and the vital work undertaken by CLDF. 

Rachel explains, “A family support officer from CLDF introduced themselves to us at the hospital and they really were a lifeline at that horrendous time, providing emotional support and much needed information. CLDF helped us understand what was going on and it was fantastic just to have someone to talk to, and to know that we were not alone. It is still so reassuring to know that CLDF are there for us whenever we need help or advice.”

Charles, who attends Hereford Cathedral Junior School, has gone from strength to strength since the operation, although he must take medication for the rest of his life to prevent him rejecting his new liver. 

Rachel adds, “After the most awful first Christmas you can imagine, Charles now loves the festivities and each year it is extremely special for the whole family.  We are very thankful that we are all here to celebrate it together.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, "It is great to hear how well Charles is doing and we are very grateful to the family for using this milestone to champion our work. Few people realise that more children are diagnosed with a liver disease than childhood leukaemia and there are currently no cures.  With over 100 different liver diseases which can affect any child of any age, we desperately need to raise more funds to continue and enhance our family support, education and research programmes. 

“But there is another very important message here, without the very generous gift from another family Charles would not be here today.  We are all enormously grateful for this unselfish act and urge people to not only support CLDF’s work but also join the organ donor register (www.uktransplant.org).  The simple fact is that you are more likely to be an organ recipient than an organ donor.  If you’re prepared to accept a donor organ then you should be prepared to be an organ donor.”

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

 - Ends -

For further information on this story please contact: 
Rachel Markham, Children’s Liver Disease Foundation,
Tel: 0121 212 6012, e-mail: communications@childliverdisease.org

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